My daughter is 33 and has been sick since her mid 20's. She has hair loss, joint pain and weakness, rashes, raynaud's, fatigue. She doesn't always have all symptoms at the same time, other times she does. They have also found some fibrosis In her lungs, a thymoma, and elevated liver enzymes. She's had Drs tell her it's lupus, scerlidoma etc. Her blood tests are constantly showing elevations up and down but never the same. Most of the doctors she's been to kind of give up and refer her to another doctor. Finally her new Dr has decided it's overlapping autoimmune diseases. She was out in Prednisone and had a severe allergic reaction. Recently they took a sample of her muscle from her thigh. It's very frustrating not getting any concrete answers or treatment. I was so happy to find this video and have a Dr finally explain this condition. She's been to do many Drs and they blood work is out of whack in just give up and for her to someone else. She's in Orlando Florida I wish she was closer to you. Please continue to post these videos. You describe her issues to a T. Thank you
What did this horrible induced thing to daughter? Steroids metabolic will cause the same unknown causes. its so delicate in the human body wile they corrupt it.
Thank you so much!!! It is so good to hear that there is good doctors out there who think a little wider way!!! My investigations are nearly stopped, because none of the test results show anything and I have a past anxiety diagnosis. This is all so defeating, but hearing this helped!
his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..
This is a great topic. I have had symptoms for 2 months that I have never had in my life. So about 15 blood tests and an EKG later no answers. They are all negative. I wish I could call Dr. House but he is a fictional TV doctor. So more tests are coming. What amazes me is that my symptoms are so definitive yet the doctors have no idea what is causing them. Thanks again for this video.
You can't get a diagnosed is a great topic. its a silent way to keep the half dead asleep in thier nightmare. its torture worse than nazi germany. at least they knew what was happening to them.
Thank you, your video will help me talking to my doctor. Been experiencing symptoms for years and have always told my lab work doesn’t make sense. Your video helps me to understand doctors challenges and importance for me to give doctor all my information. I wish you could be my doctor. 😊
Regarding focusing on one symptom at a time when you go to the doctor, my experience is that whenever I try to bring up the whole picture to a regular doctor, they just look confused and start looking at me like "you're crazy!". One of them even asked "well, what's your MAIN symptom" and then proceeded to only talking about one or two of the things that influenced me the most. So, I've totally given up on even trying to talk about everything that is going on with me. And then there's the issue of time. There simply never is enough time to discuss more than one or two things in an appointment. I've tried to circumvent that by giving some of the doctors access to an online journal that I keep, so that they can actually read about all that is going on with me in detail (I have a summary of my symptoms on a timeline, a day to day journal going back 4½ years and even diagrams that show how my main symptoms fluctuate in there), but nothing has ever come from that either. So I've come to terms with the fact that I'll probably not get any real answers in a long time, if ever. This thing I have, whatever it is, has been going on for five years now, so I'm totally fed up with it all. My goal has changed from "getting answers" to "getting relief from my symptoms". I'm seeing a rheumatologist for the first time soon. I try not to expect anything of it though (I hate being disappointed). My body is just "weird", If that was a diagnosis, I'd get that, haha.
Can you Elaborate a little on what your symtems are? Have you over 5 years ago like around six years 7 years taken any Medications more than once . Medications like Metabolic man made hormones? Prednisone can cause these symtems and stick with a person for years . any other stronger steroids like Triamcinolone Cream for the skin can make it to your blood stream causing immune Adrenal problems such as induced Cushings like syndrome and Cortisol level's causing Fibromyalgia like symtems anxiety Depression , morning waking Deprssion shakingness brain fog Confusion . also sensitivity to practically every thing including Skin - morning dressing feeling uncomfortable clothing on the skin. all this is torture and not readable on any level in medical instruments only till its to late . like Dexamethisone a strong steroid i was injected once for swelling from a product. Steroid adrenal shutdown is the worse feeling any one could have. Steroid phsychoses 2 years . my doctor suggested that i was induced with autoimmune Cushings like syndrome from taking 1 injection 5 years ago. i still go through the feeling you might be going through but worse from taking dexamethisone. that was only to be used on a dying cancer patient. Doctor who injected me the nurse was worried about doing the injection and now i know why. Doctor gets 4000 dollars injection and i get life of torure vertigo depreshion Fibromyalgia brain Damage for 5 years on going with little recovery if at all. So sorry and know what your going through. May be you never took any thing medically but the stuuf in our food water counter top meds have these man made hormones in them even tiny amounts can cause many to suffer. like we don't think about what leaded gasoline Causing millions of deaths and caused madness in Man commiting crimes they never would have thought of even Murder. If thier is a God he's Cruel to keep us like this with a book that tells you to believe all this and it will save us. well its true but gives us no benifit of the dougt. Sorry rambling but true.
@@Paarthurnaxdova That depends on a lot of things, for example how the economics of healthcare works in the country you live in. In Sweden, where I live, healthcare is next to free of charge for everyone, and the working environment is a bigger issue - doctors have a lot of patients, and sadly don't have a lot of time to spend on each of them.
No doctor has time to listen to your 100 symptoms and backstory on all those symptoms. They likely have multiple other patients that same day and you don't deserve more time then them or vice versa. I hate when patients complain about doctors like they are somehow more important or special then every other patient that day and deserve more time. So annoying and entitled. These are the same patients who complain when the doctor is running late, yet wants to complain about every symptom for over an hour at their 15 minute visit. After a very long day of listening to everyone's problems, what doctor is going to want to read your 5 year journal history of symptoms. Seems selfish to expect anyone to do that. Doctor's aren't robots who don't need sleep, free time, and self care. Dealing with 30 of you in one day would burn them out extremely quickly and then no one is better served when the doctor is burnt out. With mounds of medical school debt we can't just see 5 patients a day and give them all 2 hours to go over everything. Doesn't work that way.Get real.
I've never related more to any comment about the experience I have had as well. If one more doctor says I am just a "complex case" I will scream. I see a rheumatologist today for the first time and I'm not sure if I should be hopeful or skeptical 😭😅 How are you doing now??? Did you come to any definitive answers yet??
27 years on the merry go round. I finally found a doctor who paid attention and I have a diagnosis. Lupus. I'm legally blind, I have a bone anchored hearing aid, horrible skin, and damaged kidneys from huge stones,stents,and all the other stuff that goes with it.
You're amazing and very passionate about what you do and how you display your information. I want to say thank you for that❣️ I'm on a journey of my own when it comes down to health and your channel is very comforting just to know it is a doctor like you with your experience and your drive to assist. 💫💛💫
his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..
going on 4.5 to 5 years with no diagnosis - my dr. doesn't even want to bother with sending me to another rheumatologist because she thinks they'll just say "fibromyalgia" and dismiss me while things are getting worse and there's no real help to offer. I exercise, eat balanced, meditate daily, do the physio-therapy exercises, spend time in nature, drink a reasonable amount of water, don't smoke, don't drink alcohol, don't do drugs, even stick to decaf... and so on (I'm the guy that flosses and follows the speed limit). I think that's exactly what's made finding a diagnosis difficult though - Doctors aren't looking for the symptoms that come up in someone like me, they're looking for the symptoms that come up in an average distracted, stressed out or depressed, sedentary, sugar and caffeine addicted, weekend drinker.
So sorry to hear this! It definitely sounds like you are doing all you can to take care of yourself. The only thing I would suggest considering is the idea that fibromyalgia is an actual diagnosis. Yes, it is a diagnosis of exclusion, which means we must exclude other possibilities before settling on that diagnosis, and yes, it is an imperfect, ill-defined diagnosis. BUT if testing has been done and have been inconclusive, it may be worthwhile considering this diagnosis and it's associated treatments. It is true that 2nd opinions can be disappointing, but having another pair of eyes review your results, talk with you and examine you, I believe, is always a good idea. If they come up with new ideas - that's great! If they come to the same conclusion as your other doctors - that can be great too as we can feel more confident in the opinions we are getting if they are largely the same. Hang in there!
@@ConnectedRheumatology Steroids cause fibromyagia to the Brain if that makes any sense at all? Thank you at most we need more like you if thier is a carring God and not a evil one who seems to control .
I’ve had symptoms for 20 months that were thought to be from other illnesses - post viral fatigue after mono and Covid as well as Hashimoto’s. You just keep asking the questions and doing the investigations. Was finally diagnosed with Sjogrens.
I am rehabilitation clinician with 25 years of professional outpatient rehab experience. I can see it from both sides as I have autoimmune diseases yet I also know how befuddling a patient's symptoms and clinical presentation can be. My symptoms have worsened in the last 6 months, and based upon my own clinical experience, I could potentially have three inflammatory arthritides. I have had some *very discouraging* rheumatology experiences as a patient. However, the problem is that there is *a lot* of grey area in rheumatology and a lot of complicated diagnoses that these providers have to work with.
Black is more of an area with all the induced suffering and suicides caused from steroids of Prednisone lesser but Triamcinolone and the 5 years of torture grave like Dexamethisone did me in very badly. they blamed the torture it does from my Smoking witch is very hard to stop and my doctor said its not smoking that caused Dex to cause this. Population depletions' are working but the most cruel torturing way to achive it is down right EVIL and should be destroyed by a carring God and not the seemingly opposet of love christians think they have today . Christians are suffering idiots unfortunately don't want the truth to be true. Torture gets away with it as if we deserve it just for being Human beings or maybe Animals. My doctor diagnosed me with steroid induced cushings syndrome autoimmune like symtems and has no clue how to treat it. adderal modofinil provigil only use to bring better feelings up but now that does not work much at all. They know what they started and set it well to hide any proof against them. Doctor from Boston mass said it is Steroid Adrenal shut down is Murder. Strange to hear him say that but makes one think . Confusing to no point
It was wonderful to hear more about your career. This video clearly offers a useful perspective on the art of making an accurate diagnosis. Thank you! My rheumatologist is taking 6 months and another MRI before making a definitive diagnosis of axial spondyloarthritis in my SI joint (at age 67). She doesn’t want to prescribe lifelong medication if it is not truly indicated. Just like you talked about in the video. It makes sense to me and I am fine with waiting. And I feel fortunate my PCP referred me to a rheumatologist in the first place.
I have seronegative arthritis so my blood work shows I am a healthy person with no ailments but my physical body shows my RA, OA, Lupus, fibromyalgia and sjorgrens.
I am starting to think that I may have Seronenegative arthritis as well because my blood work comes back. Normal rheumatoid factor is negative, but yet I feel like absolute crap and have a ton of symptoms.
@@jacintawilley2849 did plaquinel help you? I was just prescribed it and scared to death to take it. Started with sulpha but had to stop because of side effects. Living in pain every day ☹️
You are an amazing Doctor with a humble heart. I wish you could be my personal doctor but unfortunately I'm not in Texas. New Subbie 🤗 Thanks for sharing. 🙏
We are coming up on 15 years now with no diagnosis. All of my blood tests now are pointing towards an autoimmune and pretty significant inflammation. My first Rhuematologist did initially diagnose me with rhualematoid arthritis because my rheumatoid factor was high for my age. That diagnosis was rescinded by my GP, and then by my rheumatologist when i called to get a refill for my methotrexate. I have no idea why. My ANA has always been negative. This is either rheumatoid arthritis or lupus. I'm going in flares and I can barely walk. I had tendonitis so bad, it felt like my arm was broken. Skin ulcers. I have cysts in my lungs. Weakness on the left side of my body. My legs will suddenly go weak and drop out. I'm becoming severely anemic. Still...apparently, I'm perfectly healthy. I just want to cry.
This might sound crazy but i and many do this. IODINE taking a few drops on any thing placing it on your teeth gums and spitting it out. it helps clear any internal infections but depending how much i do not know. Look up people using iodine on you tube. i have been taking it for 2 years keeping infection down all most gone . did not want to go to dentist torturing my mouth so i got rid of tooth abscess all most completly Gone with no pain. i could be suffering from infection poisoning of the gums' but INEXPENCIVE IODINE Keeps it away. I also have a Retainer and put the iodine in it supressing my mouth.
Yea I have a 1:640 Ana which is rare on a man, at least 8 out of 11 criteria for lupus, many symptoms that come as flares, Malar rash that expanded to my forehead, sun rashes, etc for decades but still no diagnosis. Doctors nowadays won’t follow the criteria they follow blood work only. So if you don’t get the specific sm or dsdna antibodies for lupus you won’t get diagnosed at least not in this country. Maybe go to a foreign country and try a rheumatologist over there and you might get a different answer. Doctors in the US don’t take any chances on a wrong diagnosis because they can get sued so they will wait until they have solid proof or you’re in the er. lol
Frustrating isn't even the word for my experience. Infuriating is more like it. I have had doctors completely gaslight my symptoms as normal or blame fatigue, headaches, muscle and joint pain, brain fog, and so much more on my weight, stress, and hormone fluctuations. Just lose weight and reduce stress, and I'll be all better. Well I've been trying to lose weight but nothing works, but no one listens to that and just give me all the same advice that I've tried. I can never talk about all my symptoms. They want to know what the most pressing symptoms at the moment are and look at those as if they are individual issues. No one seems to look at the big picture. I finally got a referral to rheumatology. I went in, gave the doctor a thorough patient history with everything going on. He then did a cursory 2 minute physical exam, told me that my ANA was negative, I didn't have a rheumatology issue, I might have to learn to live with my symptoms, and I should be happy that I don't have a major medical problem. I was dumbfounded.
Every time I take the time to write all of my symptom's on paper, the doctor either doesn't have time, or the interest, in reviewing them. I have a long list of issue's, but they are all relevant to getting a diagnosis.
That's exactly why I gave up on it 10 years ago and I just treated symptoms as I was able to with my pcp. Now I'm legally blind and hard of hearing- they screwed a magnet to my skull and put a sound processor on the outside so I can hear. Bone anchored hearing aid. Now I'm finally being told that I have Lupus. I didn't have to be this far down.
I was diagnosed with SLE in Dec 2011 and RA the next year. I'm 67 now. My doc is still trying to find the drug that will help me achieve remission. I'm thinking there may not be one that works for me. I've tried SOOOOO many and am currently on MTX along with Simponi Aria infusions. Suggestions? I'd get a second opinion but I don't think I can stand to go through all the years of testing and trials again. I love your channel! Listening to your videos feels like you're right in front of me in person...please move to San Antonio so I can be your patient. :)
I'm still trying to get a diagnosis. I just want you to know that I was on methotrexate for RA for about six years. About two years ago I started getting short of breath when exerting myself. I had COVID so I thought I had COVID Lung. I also don't exercise, former smoker, overweight, don't eat properly, and thought emphysema, cancer, or anything else. Finally I saw a Dr. I had been diagnosed with Pulmonary Fibrosis. My blood revealed that I was at a TOXIC LEVEL of methotrexate. Causing IDIOPATHIC NON-SPECIFIC INTERSTITIAL PULMONARY DISEASE. AKA Idiopathic NSIP. I'm now on oxygen all time and have a good friend living with me as I need help. I'm now on a transplant list for some "Slightly Used" lungs. Sorry...needed some humor. (That keeps me going) I'm only 55 years old and I was given a terminal illness that is Life Limiting. I used to be a NURSE. It sucks KNOWING what will happen to me until my VERY LAST BREATH. The only thing that keeps me from getting nuts, is that I'm able to plan my funeral and that burden will be off my family's mind. I'm sorry to talk up a storm and venting my feelings. Hope you ALL have found your peace. I have and I'm OK with it.
I m a sero negative patient ,most of my inflamitory tests came back ,negative ,so i m beign treated by symptoms only ,i m on ,plaquenil for 4 years now and a percribed anti inflamitory when i need it doing well on them i have mctd
Boy can I relate to this problem...the problem is...i can deliver faster than they can receive...or keep up...at 80 I'm not looking for miracles...just an assist. One Dr told me I had too many variations that included soft tissue issues and he didn't treat those...i didn't want to be racing to different Drs all over town especially in the snow so I chose the University where the variety were in one place...he was miffed but it was in no way a reflection of his ability... I'm just too tired, old, and in pain. Just lookin' for some relief without gallavanting all over town. I do what is in my control by eating well but sometimes that doesn't help the pain...i have been diagnosed with lupus, Sjogrens, fibro, epilepsy and other stuff.
Every medical environment has pros/cons. Smaller private practice offices tend to have less bureaucracy, but larger university medical centers have easier access to specialists. Glad you found a system that works for you!
I wish it was more simple than it is. It’s so exhausting trying to get answers. I’m 22 and have had joint pain,stiffness, tingling, and numbness for almost 6 months now. My body basically feels like I’m 80 years old. I just saw a rheumatologist, and based on my physical examination I looked “perfectly healthy”. I have a family history of different types of arthritis and lupus as well. I also have a positive ANA and a positive anti-scl 70 antibody. The only thing I was told I had was “signs that indicate inflammation”, but I was told I don’t have lupus or arthritis and I don’t “have signs that indicate scleroderma”. But I was put on medicine used in treating lupus and arthritis???? I wish it made more sense because I feel like barely anyone understands my pain and how mentally taxing it is.
Hi Dr Ortiz. Actually not every md incompetent:). A young SMART rheumatol. diagnosed my case in 5 min(ms numb hands postnatal weeks) dx ppms. It is now 35 years later, I am 77.
They don't care! They don't have more than 15 minutes! They document errors constantly! And we get sicker! Even going to Cleveland clinic was a joke! I'm just going to slowly die because I've had enough...I was an RN! It's disgusting and if you have pain you are treated like a drug seeker...it's just criminal
Its so frustrating to have so many random symptoms to fit a diagnosis, yet all your bloodwork and tests come back negative or normal. It honestly makes me feel like I'm crazy or making all this up and then I get to the point like should I even bother seeking answers anymore? What else can I do? 😞😞
his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..
I've been having various symptoms for decades, primary care doctors treat one symptom at a time. I was constantly being told to take Tylenol and go to physical therapy. More recently a resident during a sick appointment told me I don't have rhumariod arthritis because my rhumariod factor was negative. I knew better, from just a simple Google search that it takes more than that. I smiled and nodded, and said to myself, let's see what my primary care doctor says, and sure enough when I saw him he said "well your ana was positive so I'll send in a referral". Now the confusion lies between rhumariod and a simple vitamin D deficiency. At least he agreed to check my D levels due to my persistence and again, sure enough it was pretty low. It really pays to check your lab results yourself and read everything on your electronic chart to get clues.
I hear you. I feel you. Try doctronic a.i you tell all your medical concerns then it diagnosis free. Might be helpful as you can use it multiple times if you have unrelated concerns. Fast honest answers and it cares at least in words
Ok I can’t get a diagnosis but the specialists don’t want to diagnose fibromyalgia? I want a diagnosis so I can start to deal with what the hell is going on with my body. Help please! 🙏💕
First of all, my labs and tests keep coming back normal but I have full body fluid retention, even my fingers and toes. Been going on for a few years but no one knows what's going on. I also have really tough GI issues, GP and small intestinal mobility problems. Within the last 2 weeks I've developed severe leg weakness and my feet feel like they're on fire. No help and no answers to any of it. My maternal grandmother had RA so bad that there was not a joint in her body that was not affected. As a nurse I helped take care of her in a nursing home and have never seen anything like. That was the 80's and 90's though. Since then my mother's sister passed away but before she did she couldn't walk due to pain in her feet. My mom currently is having trouble walking but has no pain. I'm 57 and a female and I can't believe my sed rate 2 weeks ago was normal. I'm so frustrated.
I’m so sorry to hear about this. It is very frustrating. The tools we use to make a diagnosis are limited and the medications at our disposal are imperfect. Although we all want to be able to make a diagnosis and name something before trying to find the treatment, when a diagnosis is elusive, it may be worthwhile talking with your doctor(s) about starting something for your symptoms. Treating the symptoms (for example - burning feet may indicate a neuropathic problem (nerve issue) and may be helped with medications specific for that) doesn’t mean you are “giving up” on finding an underlying cause, but can help a person feel more comfortable as they continue to investigate. Hang in there!
Generational trauma held in the body manifest in gut issues,fibromyalgia, chronic fatigue, etc. We need social support, healing of inner child, clean diet and love.simply. Sending out tha love to everyone who is healing.
Sadly, here in the state of Florida, you can’t get it diagnosis on anything because doctors don’t look at symptomology. I have a low positive ANA with a nuclear speckled pattern and a positive1.2 RNP and a body. The truth is they could give you a small amount of medicine now and slow down the progression of whatever it is but instead they will wait until they give you cancer causing amounts of medication. Fed up and frustrated!
One doctor told me “we don’t know what causes this” - even though I went and spent a few hours searching on NCBI which gave me the answers I was looking for. If your doctor “simply doesn’t know” then they are not doing their job and should have their medical license taken away.
I'm still trying to get dx and treatment at 20 years of pretty obvious autoimmune issues! Only finally being taken (somewhat) seriously only because I now have permanent damage. Doctors keep saying I "can't possibly have x, y, z" usually because of my weight or the "weirdness" of my symptoms...once I finally get them to test for it...I have it! But my general blood work is "good" except for elevated / high esr, crp, wbc for years. I keep getting told to see a rheum for my inflammation and autoimmune disease.....rheum says I don't have inflammation so I don't have autoimmune...it's just fibro go see a therapist. So working through all the other specialists so I can get all the other things dx to "build my case" to the rheum.
While I was going through breast cancer my online community was the most helpful, supportive and medically knowledgeable place for me to figure out which treatments I could ask about, how to help my recovery happen and what I should be doing during treatments that no one in my medical team ever thought to talk to me about. The keeping your patients in the dark is a real problem that should never be ok. Working with cancer patients is much different than being suddenly thrown into the life of being a cancer patient. We don’t know anything. It’s a fine line between should I google it and feel like I might die or do I just blindly accept whatever is being decided for me? That literally would have let me die because they were ignoring the second cancer they found while they were still just focused on the one breast. I’m like hey…. Should we address this one is it nothing to worry about? No we’re worried about it, let’s get a work up….
I have polyarteritis nodosa among other things. I struggle with brain fog and I have a really hard time communicating with my rheumatologist. I feel like we aren't on the same page, not even in the same book. I would love to hear some advice on effective communication. It's also kinda difficult that she probably hasn't seen or treated this as it's rare. Feeling a bit lost.
My legs and hips have hurt for over 10 yes. My muscles, ligaments and joints all hurt. I have many of the symptoms of myositosis, but my arthritis is osteo. No has been able to help me, so my pain endures. Do you have any suggestions for me?
I had a Anti-Nuclear Ab Screen blood test done which came back as positive abnormal... beginning of January out of nowhere I started getting pins and needles in my feet and shortly after that all over body pain from head to toe... really bad headaches... nothing in body feels right not even my ears... I have all over muscle pain and im constantly getting muscle spasms all over my body and when im sleepingI get body twitching... I think I may have some joint and bone pain too because when I move or get up I hear cracking noises constantly... I am weak when I walk down stairs my legs shake... I also have a rash its red hives and sometimes they itch and I get itchy sometimes even when there is no rash... I started to get blurred vision now too... everyday I get numbness and tingling in my arms hands and feet... one time my face and head actually got numb too... i don't feel like myself at all its hard to explain but I just feel off... the pain is everyday all I do is cry and its making me very depressed... it literally came out of nowhere and is affecting my whole entire body so fast sometimes I even feel as if iam being chocked from my muscles... drs still haven't figured out what is going on... any help is appreciated if u think u might know what it may be or give me any tips on what else I can do to get answers please
Oh my! So sorry to hear this! As horrible as your symptoms feel, they don't necessarily point to any one condition. It definitely sounds like you deserve an evaluation by a rheumatologist, if you haven't already had one. When someone has symptoms that are difficult to pin down, we often will need to do a lot of tests, (labs, xrays, CTscans, etc) to try to find something. Depending on what your labs have shown, other specialists that may be helpful to you is an allergist (to evaluate your hives/itchiness) or neurologist (because of your headaches and weakness). Don't forget that even if someone doesn't have a firm diagnosis yet, there are medicines that can be used to help with the symptoms while a person has all their testing and consults done. You can talk to your primary care doctor about your most distressing symptom if there is anything available to help with it while you try to get answers. Hope this helps and good luck!
You need an MRI of your brain and spine. I have multiple Sclerosis and it's possible that that you could. It could effect blood work but MS can't be tested with blood work. You need a MRI of your brain and spine with and without contrast dye. Start searching for a good neurologist, maybe an MS specialist, now and get in with your primary doctor and ask for a referral to the MS neurologist. Don't let this go. Even if you don't have MS you very well could have MS or something else neurological. If you are dealing with any vision issues find a good opthalmologist in your area. They can see your optic nerves when they dialate your eyes. Vision issues are extremely common with MS and an opthalmologist should be able to visibly see damage your optic nerves. Don't let them tell you that you have fibromyalgia. Fibromyalgia is not a diagnosis it's a symptom of neurological diseases.
@@nicolesaylor4027 that's exactly what the rheumatologist i seen diagnosed me with was fibromyalgia... im having such a hard time accepting that... I am in so much pain all over my body and weak and get migraines that last 2 days and im throwing up the 2 days... i also get shortness of breath and I get out of breath easily when im trying to do things... I just don't feel right or like myself at all.... I get numbness tingling pins and needles... idk if fibromyalgia would cause all the things that's going on with me
@@nicolesaylor4027 I also get cracking noises all over my body when I move or walk like my joints cracking and she's telling me that's okay... I never had that unil all the other things and pain all over body happened
I’ve been diagnosed with Sjogrens Syndrome but my mildest symptoms are dry eyes and mouth. My worst symptoms are joint and muscle pain, nerve pain, fatigue and sensitivity to hot and cold. I was initially diagnosed from a positive Anti-SS-A and low antibody level. Is it possible to have Sjogrens with mild eye and mouth dryness but severe joint and muscle pains, etc?
There is still so much work needed to better understand Sjogren’s and I’m sending you lots of compassion. The short answer is, yes, the sicca symptoms (dry mouth, dry eyes) may be mild yet you could still have other symptoms. If there is any question regarding the diagnosis (if you doctor remains skeptical that Sjogren’s is driving the majority of your symptoms) you may need a lip biopsy to confirm that, yes, Sjogren’s is the driver. The reason it is important, is that fibromyalgia can be seen with a low anti-SSA antibody. It can get very muddled. Should treatment be focused on Sjgoren’s or Fibromyalgia? In my practice, it takes some time and diligence and the patient will usually end up on a little bit of treatment for both to get the best result. Hang in there and good luck!
Hello so they think I have lupus both grandparents on both sides have it . I have hashimotos and celiac and Anemia along with many more and I had positive ANAs before when diagnosing my other disorders but now they are looking for lupus it’s saying negative but my doctor is positive I have it too he said it might be because I’m not having a flare right now .. I’ve also had pneumonia for 9 months and severe asthma so I’m on a shot called fasenera for e asthma and he said that shot can be messing with my test results?!
My goodness! Well - yes having Hashimoto's, Celiac certainly puts you at risk for having another autoimmune condition, such as lupus. It is possible that a lupus patient could have a negative ANA when not in a flare, but this usually happens when the lupus flare as been controlled with medication specific for lupus, not usually on its own. There is very little data regarding fasenra and what it may or may not do to an ANA result. So in cases like this, the doc must rely on your symptoms and all your other labs (like your anemia and all the other antibodies) and it ultimately falls on the doc's best clinical judgement. A good question to ask, "Assuming I have lupus, what treatment do you recommend and what are the possible pros/cons of that treatment?" In Rheumatology, we sometimes have to move forward without all the information we 'd like, but we do it in an effort to get someone feeling better. Being mindful of not taking on too much risk, of course. Hang in there and hope this helps!
Sounds similar to me. My rheumatologist diagnosed me with connective tissue disease. He said I didn't check all of the boxes for RA although I'm being treated like I have RA. Diclofenac and Hydroxychloroquine.
Is it possible to develop scleroderma after having chemo? I never had these symptoms prior to having chemo now I test positive for scleroderma as well as sojourn
I saw a rheumatologist over a year ago mostly for hypermobility and Raynauds with a few other symptoms. My paperwork says "lupus test negative" however I've recently started developing what looks like a malar rash across my face. Can you test negative and then positive at a later date? I'm due for lab work for iron and thyroid levels and was curious as to if I should push for more extensive labs. Thanks!
My PCP refuses to diagnose my PMR symptoms. "Patient with clinical diagnosis ("symptoms" she should have said) of polymyalagia rheumatica starting in late February 2023 and self start of prednisone prior to evaluation. Continues to report return of severe symptoms with titration of prednisone well beyond 6 weeks of symptoms making diagnosis quite uncertain." HAHAH, more likely I'll be on prednisone 6 years! So she changed my diagnosis to Myalgia/Myositis, Multiple Does she honestly believe that prednisone cures PMR and that six weeks of prednisone tapering with flares at every drop occludes the diagnosis?
Every Rhemy ive had sucked they dont know what's wrong with me but wasn't to put me on meds I've been in severe pain for years whole life flipped upside down and they basicly tell me they don't know I'm just tired they make things so hard
So...what do you do....when it has been 13+ years.... and you have still not found out what the root cause of your symptoms is. Several secondary conditions have been diagnosed....but no root cause...
You can have symptoms for years that give you a poor quality of life and still have a low positive ANA, low positive RNP antibodies along with Hashimoto’s disease and a rheumatoidlogist just looks at you like you’re crazy. I don’t know if it’s just Florida and maybe I should go up north and talk to a rheumatologist up there. It seems the medical system hasn’t developed anything for prevention and an all designed to maximize profits.
My Doctors keep telling me I have Cadasil. Blood test and skin biopsy were both negative. I had a stroke in 2017. Mri test, many of them. They still say cadasil. I feel its either MS or Lupus. I have symptoms that mimic MS, Lupus, any autoimmune. My doctors tell me its a variant of cadasil. Im not clear on what that means. One nuerologist told me I had 5 yrs to live. Im 66 which means 4 more yrs to live. Im at my wits end!!!
I also have white lesions on my brain. Attacks the blood vessels and nerves in my body. Im suffering. I also get these small crusty sores on my arms and legs. My head feels like someone is raking all on the top of my head. Very painful. Its 24/7 of it.
Patients should be educated at about GASLIGHTING and patient bill of rights! @romyonrare WE ARE NOT BORN WIEH A CHECK ENGINE LIGHT. Don’t forget to br your own best dashboard
I’m feeling all that you said! I want a diagnosis for peace of mind so badly. Thank you for this video ❤
My daughter is 33 and has been sick since her mid 20's. She has hair loss, joint pain and weakness, rashes, raynaud's, fatigue. She doesn't always have all symptoms at the same time, other times she does. They have also found some fibrosis In her lungs, a thymoma, and elevated liver enzymes. She's had Drs tell her it's lupus, scerlidoma etc. Her blood tests are constantly showing elevations up and down but never the same. Most of the doctors she's been to kind of give up and refer her to another doctor. Finally her new Dr has decided it's overlapping autoimmune diseases. She was out in Prednisone and had a severe allergic reaction. Recently they took a sample of her muscle from her thigh. It's very frustrating not getting any concrete answers or treatment. I was so happy to find this video and have a Dr finally explain this condition. She's been to do many Drs and they blood work is out of whack in just give up and for her to someone else. She's in Orlando Florida I wish she was closer to you. Please continue to post these videos. You describe her issues to a T. Thank you
What did this horrible induced thing to daughter? Steroids metabolic will cause the same unknown causes. its so delicate in the human body wile they corrupt it.
Thank you so much!!! It is so good to hear that there is good doctors out there who think a little wider way!!!
My investigations are nearly stopped, because none of the test results show anything and I have a past anxiety diagnosis. This is all so defeating, but hearing this helped!
his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..
This is a great topic. I have had symptoms for 2 months that I have never had in my life. So about 15 blood tests and an EKG later no answers. They are all negative. I wish I could call Dr. House but he is a fictional TV doctor. So more tests are coming. What amazes me is that my symptoms are so definitive yet the doctors have no idea what is causing them. Thanks again for this video.
So frustrating, I know. For the doctors too. Hang in there and don’t stop pushing your docs to keep thinking outside the box!
You can't get a diagnosed is a great topic. its a silent way to keep the half dead asleep in thier nightmare. its torture worse than nazi germany. at least they knew what was happening to them.
Did you have covid vaccine before it started ?
@@konstantinaskoula1266 Now your adrenals hate you for it.
Thank you, your video will help me talking to my doctor. Been experiencing symptoms for years and have always told my lab work doesn’t make sense. Your video helps me to understand doctors challenges and importance for me to give doctor all my information. I wish you could be my doctor. 😊
Regarding focusing on one symptom at a time when you go to the doctor, my experience is that whenever I try to bring up the whole picture to a regular doctor, they just look confused and start looking at me like "you're crazy!". One of them even asked "well, what's your MAIN symptom" and then proceeded to only talking about one or two of the things that influenced me the most. So, I've totally given up on even trying to talk about everything that is going on with me.
And then there's the issue of time. There simply never is enough time to discuss more than one or two things in an appointment. I've tried to circumvent that by giving some of the doctors access to an online journal that I keep, so that they can actually read about all that is going on with me in detail (I have a summary of my symptoms on a timeline, a day to day journal going back 4½ years and even diagrams that show how my main symptoms fluctuate in there), but nothing has ever come from that either. So I've come to terms with the fact that I'll probably not get any real answers in a long time, if ever. This thing I have, whatever it is, has been going on for five years now, so I'm totally fed up with it all. My goal has changed from "getting answers" to "getting relief from my symptoms".
I'm seeing a rheumatologist for the first time soon. I try not to expect anything of it though (I hate being disappointed). My body is just "weird", If that was a diagnosis, I'd get that, haha.
Can you Elaborate a little on what your symtems are? Have you over 5 years ago like around six years 7 years taken any Medications more than once . Medications like Metabolic man made hormones? Prednisone can cause these symtems and stick with a person for years . any other stronger steroids like Triamcinolone Cream for the skin can make it to your blood stream causing immune Adrenal problems such as induced Cushings like syndrome and Cortisol level's causing Fibromyalgia like symtems anxiety Depression , morning waking Deprssion shakingness brain fog Confusion . also sensitivity to practically every thing including Skin - morning dressing feeling uncomfortable clothing on the skin. all this is torture and not readable on any level in medical instruments only till its to late . like Dexamethisone a strong steroid i was injected once for swelling from a product. Steroid adrenal shutdown is the worse feeling any one could have. Steroid phsychoses 2 years . my doctor suggested that i was induced with autoimmune Cushings like syndrome from taking 1 injection 5 years ago. i still go through the feeling you might be going through but worse from taking dexamethisone. that was only to be used on a dying cancer patient. Doctor who injected me the nurse was worried about doing the injection and now i know why. Doctor gets 4000 dollars injection and i get life of torure vertigo depreshion Fibromyalgia brain Damage for 5 years on going with little recovery if at all. So sorry and know what your going through. May be you never took any thing medically but the stuuf in our food water counter top meds have these man made hormones in them even tiny amounts can cause many to suffer. like we don't think about what leaded gasoline Causing millions of deaths and caused madness in Man commiting crimes they never would have thought of even Murder. If thier is a God he's Cruel to keep us like this with a book that tells you to believe all this and it will save us. well its true but gives us no benifit of the dougt. Sorry rambling but true.
No doctor is going to care enough to read a patient’s journal. They only care about 💵
@@Paarthurnaxdova That depends on a lot of things, for example how the economics of healthcare works in the country you live in. In Sweden, where I live, healthcare is next to free of charge for everyone, and the working environment is a bigger issue - doctors have a lot of patients, and sadly don't have a lot of time to spend on each of them.
No doctor has time to listen to your 100 symptoms and backstory on all those symptoms. They likely have multiple other patients that same day and you don't deserve more time then them or vice versa. I hate when patients complain about doctors like they are somehow more important or special then every other patient that day and deserve more time. So annoying and entitled. These are the same patients who complain when the doctor is running late, yet wants to complain about every symptom for over an hour at their 15 minute visit.
After a very long day of listening to everyone's problems, what doctor is going to want to read your 5 year journal history of symptoms. Seems selfish to expect anyone to do that. Doctor's aren't robots who don't need sleep, free time, and self care. Dealing with 30 of you in one day would burn them out extremely quickly and then no one is better served when the doctor is burnt out. With mounds of medical school debt we can't just see 5 patients a day and give them all 2 hours to go over everything. Doesn't work that way.Get real.
I've never related more to any comment about the experience I have had as well.
If one more doctor says I am just a "complex case" I will scream.
I see a rheumatologist today for the first time and I'm not sure if I should be hopeful or skeptical 😭😅
How are you doing now??? Did you come to any definitive answers yet??
27 years on the merry go round. I finally found a doctor who paid attention and I have a diagnosis. Lupus. I'm legally blind, I have a bone anchored hearing aid, horrible skin, and damaged kidneys from huge stones,stents,and all the other stuff that goes with it.
You're amazing and very passionate about what you do and how you display your information. I want to say thank you for that❣️ I'm on a journey of my own when it comes down to health and your channel is very comforting just to know it is a doctor like you with your experience and your drive to assist. 💫💛💫
his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..
going on 4.5 to 5 years with no diagnosis - my dr. doesn't even want to bother with sending me to another rheumatologist because she thinks they'll just say "fibromyalgia" and dismiss me while things are getting worse and there's no real help to offer.
I exercise, eat balanced, meditate daily, do the physio-therapy exercises, spend time in nature, drink a reasonable amount of water, don't smoke, don't drink alcohol, don't do drugs, even stick to decaf... and so on (I'm the guy that flosses and follows the speed limit). I think that's exactly what's made finding a diagnosis difficult though - Doctors aren't looking for the symptoms that come up in someone like me, they're looking for the symptoms that come up in an average distracted, stressed out or depressed, sedentary, sugar and caffeine addicted, weekend drinker.
So sorry to hear this! It definitely sounds like you are doing all you can to take care of yourself. The only thing I would suggest considering is the idea that fibromyalgia is an actual diagnosis. Yes, it is a diagnosis of exclusion, which means we must exclude other possibilities before settling on that diagnosis, and yes, it is an imperfect, ill-defined diagnosis. BUT if testing has been done and have been inconclusive, it may be worthwhile considering this diagnosis and it's associated treatments. It is true that 2nd opinions can be disappointing, but having another pair of eyes review your results, talk with you and examine you, I believe, is always a good idea. If they come up with new ideas - that's great! If they come to the same conclusion as your other doctors - that can be great too as we can feel more confident in the opinions we are getting if they are largely the same. Hang in there!
Read the book “How I healed my arthritis”.
@@ConnectedRheumatology Steroids cause fibromyagia to the Brain if that makes any sense at all? Thank you at most we need more like you if thier is a carring God and not a evil one who seems to control .
I feel your pain! Me too
I can understand why you need suger caffeine to help keep us up going as much as possible. i switched to Honey a few years ago .
I’ve had symptoms for 20 months that were thought to be from other illnesses - post viral fatigue after mono and Covid as well as Hashimoto’s. You just keep asking the questions and doing the investigations. Was finally diagnosed with Sjogrens.
I am rehabilitation clinician with 25 years of professional outpatient rehab experience. I can see it from both sides as I have autoimmune diseases yet I also know how befuddling a patient's symptoms and clinical presentation can be. My symptoms have worsened in the last 6 months, and based upon my own clinical experience, I could potentially have three inflammatory arthritides. I have had some *very discouraging* rheumatology experiences as a patient. However, the problem is that there is *a lot* of grey area in rheumatology and a lot of complicated diagnoses that these providers have to work with.
Black is more of an area with all the induced suffering and suicides caused from steroids of Prednisone lesser but Triamcinolone and the 5 years of torture grave like Dexamethisone did me in very badly. they blamed the torture it does from my Smoking witch is very hard to stop and my doctor said its not smoking that caused Dex to cause this. Population depletions' are working but the most cruel torturing way to achive it is down right EVIL and should be destroyed by a carring God and not the seemingly opposet of love christians think they have today . Christians are suffering idiots unfortunately don't want the truth to be true. Torture gets away with it as if we deserve it just for being Human beings or maybe Animals. My doctor diagnosed me with steroid induced cushings syndrome autoimmune like symtems and has no clue how to treat it. adderal modofinil provigil only use to bring better feelings up but now that does not work much at all. They know what they started and set it well to hide any proof against them. Doctor from Boston mass said it is Steroid Adrenal shut down is Murder. Strange to hear him say that but makes one think . Confusing to no point
It was wonderful to hear more about your career. This video clearly offers a useful perspective on the art of making an accurate diagnosis. Thank you!
My rheumatologist is taking 6 months and another MRI before making a definitive diagnosis of axial spondyloarthritis in my SI joint (at age 67). She doesn’t want to prescribe lifelong medication if it is not truly indicated. Just like you talked about in the video. It makes sense to me and I am fine with waiting. And I feel fortunate my PCP referred me to a rheumatologist in the first place.
I have seronegative arthritis so my blood work shows I am a healthy person with no ailments but my physical body shows my RA, OA, Lupus, fibromyalgia and sjorgrens.
I am starting to think that I may have Seronenegative arthritis as well because my blood work comes back. Normal rheumatoid factor is negative, but yet I feel like absolute crap and have a ton of symptoms.
Did you get any treatment? I am in the same boat😞
@tanyaluchko9003 I have been seeing Rheumatologists since I was 25, I am 49 now and they just give me Brufen and Plaquinel
@@jacintawilley2849 did plaquinel help you? I was just prescribed it and scared to death to take it. Started with sulpha but had to stop because of side effects. Living in pain every day ☹️
@tanyaluchko9003 Plaquenil helped for a while but then my eyes started having issues and so I had to stop. Brufen deals with my pain but only mildly
You are an amazing Doctor with a humble heart. I wish you could be my personal doctor but unfortunately I'm not in Texas. New Subbie 🤗 Thanks for sharing. 🙏
I would love a doctor like you
I have been looking at Lupus symptoms 😢
We are coming up on 15 years now with no diagnosis. All of my blood tests now are pointing towards an autoimmune and pretty significant inflammation. My first Rhuematologist did initially diagnose me with rhualematoid arthritis because my rheumatoid factor was high for my age. That diagnosis was rescinded by my GP, and then by my rheumatologist when i called to get a refill for my methotrexate. I have no idea why. My ANA has always been negative. This is either rheumatoid arthritis or lupus. I'm going in flares and I can barely walk. I had tendonitis so bad, it felt like my arm was broken. Skin ulcers. I have cysts in my lungs. Weakness on the left side of my body. My legs will suddenly go weak and drop out. I'm becoming severely anemic. Still...apparently, I'm perfectly healthy. I just want to cry.
This might sound crazy but i and many do this. IODINE taking a few drops on any thing placing it on your teeth gums and spitting it out. it helps clear any internal infections but depending how much i do not know. Look up people using iodine on you tube. i have been taking it for 2 years keeping infection down all most gone . did not want to go to dentist torturing my mouth so i got rid of tooth abscess all most completly Gone with no pain. i could be suffering from infection poisoning of the gums' but INEXPENCIVE IODINE Keeps it away. I also have a Retainer and put the iodine in it supressing my mouth.
Yea I have a 1:640 Ana which is rare on a man, at least 8 out of 11 criteria for lupus, many symptoms that come as flares, Malar rash that expanded to my forehead, sun rashes, etc for decades but still no diagnosis. Doctors nowadays won’t follow the criteria they follow blood work only. So if you don’t get the specific sm or dsdna antibodies for lupus you won’t get diagnosed at least not in this country. Maybe go to a foreign country and try a rheumatologist over there and you might get a different answer. Doctors in the US don’t take any chances on a wrong diagnosis because they can get sued so they will wait until they have solid proof or you’re in the er. lol
Frustrating isn't even the word for my experience. Infuriating is more like it. I have had doctors completely gaslight my symptoms as normal or blame fatigue, headaches, muscle and joint pain, brain fog, and so much more on my weight, stress, and hormone fluctuations. Just lose weight and reduce stress, and I'll be all better. Well I've been trying to lose weight but nothing works, but no one listens to that and just give me all the same advice that I've tried. I can never talk about all my symptoms. They want to know what the most pressing symptoms at the moment are and look at those as if they are individual issues. No one seems to look at the big picture. I finally got a referral to rheumatology. I went in, gave the doctor a thorough patient history with everything going on. He then did a cursory 2 minute physical exam, told me that my ANA was negative, I didn't have a rheumatology issue, I might have to learn to live with my symptoms, and I should be happy that I don't have a major medical problem. I was dumbfounded.
Every time I take the time to write all of my symptom's on paper, the doctor either doesn't have time, or the interest, in reviewing them. I have a long list of issue's, but they are all relevant to getting a diagnosis.
That's exactly why I gave up on it 10 years ago and I just treated symptoms as I was able to with my pcp. Now I'm legally blind and hard of hearing- they screwed a magnet to my skull and put a sound processor on the outside so I can hear. Bone anchored hearing aid. Now I'm finally being told that I have Lupus. I didn't have to be this far down.
100%. Four trips to Emerg and phone consults with family GP were a total waste of time.
I was diagnosed with SLE in Dec 2011 and RA the next year. I'm 67 now. My doc is still trying to find the drug that will help me achieve remission. I'm thinking there may not be one that works for me. I've tried SOOOOO many and am currently on MTX along with Simponi Aria infusions. Suggestions? I'd get a second opinion but I don't think I can stand to go through all the years of testing and trials again.
I love your channel! Listening to your videos feels like you're right in front of me in person...please move to San Antonio so I can be your patient. :)
And all the money they made would make one pretty pissed.
I'm still trying to get a diagnosis. I just want you to know that I was on methotrexate for RA for about six years. About two years ago I started getting short of breath when exerting myself. I had COVID so I thought I had COVID Lung. I also don't exercise, former smoker, overweight, don't eat properly, and thought emphysema, cancer, or anything else. Finally I saw a Dr. I had been diagnosed with Pulmonary Fibrosis. My blood revealed that I was at a TOXIC LEVEL of methotrexate. Causing IDIOPATHIC NON-SPECIFIC INTERSTITIAL PULMONARY DISEASE. AKA Idiopathic NSIP. I'm now on oxygen all time and have a good friend living with me as I need help. I'm now on a transplant list for some "Slightly Used" lungs. Sorry...needed some humor. (That keeps me going) I'm only 55 years old and I was given a terminal illness that is Life Limiting. I used to be a NURSE. It sucks KNOWING what will happen to me until my VERY LAST BREATH. The only thing that keeps me from getting nuts, is that I'm able to plan my funeral and that burden will be off my family's mind. I'm sorry to talk up a storm and venting my feelings. Hope you ALL have found your peace. I have and I'm OK with it.
@@kathrynmalekoff💛🙏🫁
I think you should talk about the changing of diagnosis
I m a sero negative patient ,most of my inflamitory tests came back ,negative ,so i m beign treated by symptoms only ,i m on ,plaquenil for 4 years now and a percribed anti inflamitory when i need it doing well on them i have mctd
Your eyebrows are amazing.
Best doctor!
Boy can I relate to this problem...the problem is...i can deliver faster than they can receive...or keep up...at 80 I'm not looking for miracles...just an assist. One Dr told me I had too many variations that included soft tissue issues and he didn't treat those...i didn't want to be racing to different Drs all over town especially in the snow so I chose the University where the variety were in one place...he was miffed but it was in no way a reflection of his ability... I'm just too tired, old, and in pain. Just lookin' for some relief without gallavanting all over town. I do what is in my control by eating well but sometimes that doesn't help the pain...i have been diagnosed with lupus, Sjogrens, fibro, epilepsy and other stuff.
Every medical environment has pros/cons. Smaller private practice offices tend to have less bureaucracy, but larger university medical centers have easier access to specialists. Glad you found a system that works for you!
I wish it was more simple than it is. It’s so exhausting trying to get answers. I’m 22 and have had joint pain,stiffness, tingling, and numbness for almost 6 months now. My body basically feels like I’m 80 years old. I just saw a rheumatologist, and based on my physical examination I looked “perfectly healthy”. I have a family history of different types of arthritis and lupus as well. I also have a positive ANA and a positive anti-scl 70 antibody. The only thing I was told I had was “signs that indicate inflammation”, but I was told I don’t
have lupus or arthritis and I don’t “have
signs that indicate scleroderma”. But I was put on medicine used in treating lupus and
arthritis???? I wish it made more sense because I feel like barely anyone understands my pain and how mentally taxing it is.
Hi Dr Ortiz. Actually not every md incompetent:). A young SMART rheumatol. diagnosed my case in 5 min(ms numb hands postnatal weeks) dx ppms. It is now 35 years later, I am 77.
They don't care! They don't have more than 15 minutes! They document errors constantly! And we get sicker! Even going to Cleveland clinic was a joke! I'm just going to slowly die because I've had enough...I was an RN! It's disgusting and if you have pain you are treated like a drug seeker...it's just criminal
The Cleveland clinic sucks. They only care about money. You are a number to them.
Its so frustrating to have so many random symptoms to fit a diagnosis, yet all your bloodwork and tests come back negative or normal. It honestly makes me feel like I'm crazy or making all this up and then I get to the point like should I even bother seeking answers anymore? What else can I do? 😞😞
I appreciate this video so much💕
his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..
I've been having various symptoms for decades, primary care doctors treat one symptom at a time. I was constantly being told to take Tylenol and go to physical therapy. More recently a resident during a sick appointment told me I don't have rhumariod arthritis because my rhumariod factor was negative. I knew better, from just a simple Google search that it takes more than that. I smiled and nodded, and said to myself, let's see what my primary care doctor says, and sure enough when I saw him he said "well your ana was positive so I'll send in a referral". Now the confusion lies between rhumariod and a simple vitamin D deficiency. At least he agreed to check my D levels due to my persistence and again, sure enough it was pretty low. It really pays to check your lab results yourself and read everything on your electronic chart to get clues.
I hear you. I feel you.
Try doctronic a.i you tell all your medical concerns then it diagnosis free. Might be helpful as you can use it multiple times if you have unrelated concerns. Fast honest answers and it cares at least in words
Ok I can’t get a diagnosis but the specialists don’t want to diagnose fibromyalgia? I want a diagnosis so I can start to deal with what the hell is going on with my body. Help please! 🙏💕
First of all, my labs and tests keep coming back normal but I have full body fluid retention, even my fingers and toes. Been going on for a few years but no one knows what's going on. I also have really tough GI issues, GP and small intestinal mobility problems. Within the last 2 weeks I've developed severe leg weakness and my feet feel like they're on fire. No help and no answers to any of it. My maternal grandmother had RA so bad that there was not a joint in her body that was not affected. As a nurse I helped take care of her in a nursing home and have never seen anything like. That was the 80's and 90's though. Since then my mother's sister passed away but before she did she couldn't walk due to pain in her feet. My mom currently is having trouble walking but has no pain. I'm 57 and a female and I can't believe my sed rate 2 weeks ago was normal. I'm so frustrated.
I’m so sorry to hear about this. It is very frustrating. The tools we use to make a diagnosis are limited and the medications at our disposal are imperfect. Although we all want to be able to make a diagnosis and name something before trying to find the treatment, when a diagnosis is elusive, it may be worthwhile talking with your doctor(s) about starting something for your symptoms. Treating the symptoms (for example - burning feet may indicate a neuropathic problem (nerve issue) and may be helped with medications specific for that) doesn’t mean you are “giving up” on finding an underlying cause, but can help a person feel more comfortable as they continue to investigate. Hang in there!
Generational trauma held in the body manifest in gut issues,fibromyalgia, chronic fatigue, etc. We need social support, healing of inner child, clean diet and love.simply.
Sending out tha love to everyone who is healing.
Sadly, here in the state of Florida, you can’t get it diagnosis on anything because doctors don’t look at symptomology. I have a low positive ANA with a nuclear speckled pattern and a positive1.2 RNP and a body. The truth is they could give you a small amount of medicine now and slow down the progression of whatever it is but instead they will wait until they give you cancer causing amounts of medication. Fed up and frustrated!
One doctor told me “we don’t know what causes this” - even though I went and spent a few hours searching on NCBI which gave me the answers I was looking for. If your doctor “simply doesn’t know” then they are not doing their job and should have their medical license taken away.
I also get “sometimes these things happen” and no initiative to find out why.
I'm still trying to get dx and treatment at 20 years of pretty obvious autoimmune issues! Only finally being taken (somewhat) seriously only because I now have permanent damage. Doctors keep saying I "can't possibly have x, y, z" usually because of my weight or the "weirdness" of my symptoms...once I finally get them to test for it...I have it! But my general blood work is "good" except for elevated / high esr, crp, wbc for years. I keep getting told to see a rheum for my inflammation and autoimmune disease.....rheum says I don't have inflammation so I don't have autoimmune...it's just fibro go see a therapist. So working through all the other specialists so I can get all the other things dx to "build my case" to the rheum.
While I was going through breast cancer my online community was the most helpful, supportive and medically knowledgeable place for me to figure out which treatments I could ask about, how to help my recovery happen and what I should be doing during treatments that no one in my medical team ever thought to talk to me about.
The keeping your patients in the dark is a real problem that should never be ok. Working with cancer patients is much different than being suddenly thrown into the life of being a cancer patient. We don’t know anything. It’s a fine line between should I google it and feel like I might die or do I just blindly accept whatever is being decided for me? That literally would have let me die because they were ignoring the second cancer they found while they were still just focused on the one breast. I’m like hey…. Should we address this one is it nothing to worry about?
No we’re worried about it, let’s get a work up….
I have polyarteritis nodosa among other things. I struggle with brain fog and I have a really hard time communicating with my rheumatologist. I feel like we aren't on the same page, not even in the same book. I would love to hear some advice on effective communication. It's also kinda difficult that she probably hasn't seen or treated this as it's rare. Feeling a bit lost.
My legs and hips have hurt for over 10 yes. My muscles, ligaments and joints all hurt. I have many of the symptoms of myositosis, but my arthritis is osteo. No has been able to help me, so my pain endures. Do you have any suggestions for me?
I have a diagnosis, finally, after at least 30 years. Have only women on medical team NOW, except 1 neurologist who is fantastic.
Ellaborate please on what is so fantastical
I had a Anti-Nuclear Ab Screen blood test done which came back as positive abnormal... beginning of January out of nowhere I started getting pins and needles in my feet and shortly after that all over body pain from head to toe... really bad headaches... nothing in body feels right not even my ears... I have all over muscle pain and im constantly getting muscle spasms all over my body and when im sleepingI get body twitching... I think I may have some joint and bone pain too because when I move or get up I hear cracking noises constantly... I am weak when I walk down stairs my legs shake... I also have a rash its red hives and sometimes they itch and I get itchy sometimes even when there is no rash... I started to get blurred vision now too... everyday I get numbness and tingling in my arms hands and feet... one time my face and head actually got numb too... i don't feel like myself at all its hard to explain but I just feel off... the pain is everyday all I do is cry and its making me very depressed... it literally came out of nowhere and is affecting my whole entire body so fast sometimes I even feel as if iam being chocked from my muscles... drs still haven't figured out what is going on... any help is appreciated if u think u might know what it may be or give me any tips on what else I can do to get answers please
Oh my! So sorry to hear this! As horrible as your symptoms feel, they don't necessarily point to any one condition. It definitely sounds like you deserve an evaluation by a rheumatologist, if you haven't already had one. When someone has symptoms that are difficult to pin down, we often will need to do a lot of tests, (labs, xrays, CTscans, etc) to try to find something. Depending on what your labs have shown, other specialists that may be helpful to you is an allergist (to evaluate your hives/itchiness) or neurologist (because of your headaches and weakness). Don't forget that even if someone doesn't have a firm diagnosis yet, there are medicines that can be used to help with the symptoms while a person has all their testing and consults done. You can talk to your primary care doctor about your most distressing symptom if there is anything available to help with it while you try to get answers. Hope this helps and good luck!
You need an MRI of your brain and spine. I have multiple Sclerosis and it's possible that that you could. It could effect blood work but MS can't be tested with blood work. You need a MRI of your brain and spine with and without contrast dye. Start searching for a good neurologist, maybe an MS specialist, now and get in with your primary doctor and ask for a referral to the MS neurologist. Don't let this go. Even if you don't have MS you very well could have MS or something else neurological. If you are dealing with any vision issues find a good opthalmologist in your area. They can see your optic nerves when they dialate your eyes. Vision issues are extremely common with MS and an opthalmologist should be able to visibly see damage your optic nerves. Don't let them tell you that you have fibromyalgia. Fibromyalgia is not a diagnosis it's a symptom of neurological diseases.
@@nicolesaylor4027 that's exactly what the rheumatologist i seen diagnosed me with was fibromyalgia... im having such a hard time accepting that... I am in so much pain all over my body and weak and get migraines that last 2 days and im throwing up the 2 days... i also get shortness of breath and I get out of breath easily when im trying to do things... I just don't feel right or like myself at all.... I get numbness tingling pins and needles... idk if fibromyalgia would cause all the things that's going on with me
@@nicolesaylor4027 I also get cracking noises all over my body when I move or walk like my joints cracking and she's telling me that's okay... I never had that unil all the other things and pain all over body happened
@@nicolesaylor4027 even if I don't have ms im still scared that I may have some other type of autoimmune disease
I’ve been diagnosed with Sjogrens Syndrome but my mildest symptoms are dry eyes and mouth. My worst symptoms are joint and muscle pain, nerve pain, fatigue and sensitivity to hot and cold. I was initially diagnosed from a positive Anti-SS-A and low antibody level. Is it possible to have Sjogrens with mild eye and mouth dryness but severe joint and muscle pains, etc?
There is still so much work needed to better understand Sjogren’s and I’m sending you lots of compassion. The short answer is, yes, the sicca symptoms (dry mouth, dry eyes) may be mild yet you could still have other symptoms. If there is any question regarding the diagnosis (if you doctor remains skeptical that Sjogren’s is driving the majority of your symptoms) you may need a lip biopsy to confirm that, yes, Sjogren’s is the driver. The reason it is important, is that fibromyalgia can be seen with a low anti-SSA antibody. It can get very muddled. Should treatment be focused on Sjgoren’s or Fibromyalgia? In my practice, it takes some time and diligence and the patient will usually end up on a little bit of treatment for both to get the best result. Hang in there and good luck!
Are you still in active practice in Dallas?
Hello so they think I have lupus both grandparents on both sides have it . I have hashimotos and celiac and Anemia along with many more and I had positive ANAs before when diagnosing my other disorders but now they are looking for lupus it’s saying negative but my doctor is positive I have it too he said it might be because I’m not having a flare right now .. I’ve also had pneumonia for 9 months and severe asthma so I’m on a shot called fasenera for e asthma and he said that shot can be messing with my test results?!
My goodness! Well - yes having Hashimoto's, Celiac certainly puts you at risk for having another autoimmune condition, such as lupus. It is possible that a lupus patient could have a negative ANA when not in a flare, but this usually happens when the lupus flare as been controlled with medication specific for lupus, not usually on its own. There is very little data regarding fasenra and what it may or may not do to an ANA result. So in cases like this, the doc must rely on your symptoms and all your other labs (like your anemia and all the other antibodies) and it ultimately falls on the doc's best clinical judgement. A good question to ask, "Assuming I have lupus, what treatment do you recommend and what are the possible pros/cons of that treatment?" In Rheumatology, we sometimes have to move forward without all the information we 'd like, but we do it in an effort to get someone feeling better. Being mindful of not taking on too much risk, of course. Hang in there and hope this helps!
My rheumatologist said I have undifferentiated connective tissue disease. Lots of markers no diagnose.
Sounds similar to me. My rheumatologist diagnosed me with connective tissue disease. He said I didn't check all of the boxes for RA although I'm being treated like I have RA. Diclofenac and Hydroxychloroquine.
Is it possible to develop scleroderma after having chemo? I never had these symptoms prior to having chemo now I test positive for scleroderma as well as sojourn
I saw a rheumatologist over a year ago mostly for hypermobility and Raynauds with a few other symptoms. My paperwork says "lupus test negative" however I've recently started developing what looks like a malar rash across my face. Can you test negative and then positive at a later date? I'm due for lab work for iron and thyroid levels and was curious as to if I should push for more extensive labs. Thanks!
My PCP refuses to diagnose my PMR symptoms.
"Patient with clinical diagnosis ("symptoms" she should have said) of polymyalagia rheumatica starting in late February 2023 and self start of prednisone prior to evaluation. Continues to report return of severe symptoms with titration of prednisone well beyond 6 weeks of symptoms making diagnosis quite uncertain."
HAHAH, more likely I'll be on prednisone 6 years!
So she changed my diagnosis to Myalgia/Myositis, Multiple
Does she honestly believe that prednisone cures PMR and that six weeks of prednisone tapering with flares at every drop occludes the diagnosis?
Every Rhemy ive had sucked they dont know what's wrong with me but wasn't to put me on meds I've been in severe pain for years whole life flipped upside down and they basicly tell me they don't know I'm just tired they make things so hard
So...what do you do....when it has been 13+ years.... and you have still not found out what the root cause of your symptoms is. Several secondary conditions have been diagnosed....but no root cause...
Hi, do you know Dr. Wallace?
My labs for autoimmune are perfect. Now what? I have Hashimotos and feel I have autoimmune disease in addition.
I feel its WAY TO EASY to just "REFER" to another Dr, and they go back and forth its ridiculous! They dont even try anymore..
Because there is no big $ in cures, only in treatment.
Absolutely
That is the answer 100%
Take pictures of all the weird stuff.
You can't get a diagnosis because a lot of times, doctors dont want to do testing.
You can have symptoms for years that give you a poor quality of life and still have a low positive ANA, low positive RNP antibodies along with Hashimoto’s disease and a rheumatoidlogist just looks at you like you’re crazy. I don’t know if it’s just Florida and maybe I should go up north and talk to a rheumatologist up there. It seems the medical system hasn’t developed anything for prevention and an all designed to maximize profits.
My Doctors keep telling me I have Cadasil. Blood test and skin biopsy were both negative. I had a stroke in 2017. Mri test, many of them. They still say cadasil. I feel its either MS or Lupus. I have symptoms that mimic MS, Lupus, any autoimmune. My doctors tell me its a variant of cadasil. Im not clear on what that means. One nuerologist told me I had 5 yrs to live. Im 66 which means 4 more yrs to live. Im at my wits end!!!
I also have white lesions on my brain. Attacks the blood vessels and nerves in my body. Im suffering. I also get these small crusty sores on my arms and legs. My head feels like someone is raking all on the top of my head. Very painful. Its 24/7 of it.
Ok. I'm gone when you start making excuses for all doctors.
It’s a huge red flag when no doctor will tell you that a strict carnivore diet will cure you from everything!
that's because it won't lol. also it's very bad for your colon
BS Alert!
BS Alert!
Bah heh hahaha. Obviously lacking in formal education.
Obviously working from Dunning Krueger effect.
You will not be treated until your quality of life is so poor you could care less.
Buy your own meds online!
Or maybe the patient has bad luck hasnt met a good doctor
Love the content, but with misophonia I can't tolerate listening because of the lip smacking every few seconds.
That's probably your device, not Dr. Ortiz.
Turn down the sound and put captioning on.
Patients should be educated at about GASLIGHTING and patient bill of rights! @romyonrare WE ARE NOT BORN WIEH A CHECK ENGINE LIGHT. Don’t forget to br your own best dashboard