Thank you for sharing. I was diagnosed with MCTD and sjogren. Initially I would experience loss of breath (like my lungs were closed) sore throat, dry patches around my hairline, chest and shoulders, a fever and headache that would not go away even with meds and SEVERE fatigue. I felt like my blood was heavy and weighted so I couldn't move without difficulty. Thank God I found a rheumatologist who listens. Today I'm not on any meds. My diet is (mostly) gluten free and plant-based. I stay away from inflammatory foods. But most importantly I decrease and stay away from STRESS! That is the number 1 trigger of a flare up for me. Praying for you all to have phenomenal healing and radiant health!🙏🏾
I was diagnosed with MCTD last year and it was the most difficult thing I had to go through. I was given the same medications; steroid and hydroxychloroquine. I remembered when I was diagnosed I was searching for people or community with similar story. Thank you for sharing your story. I am currently on hydroxychloroquine but experience mild stiffness in the joint of my fingers at morning, and it gets better as the day progresses.
So glad that you are feeling better. I know how it feels to look for information and feel somewhat isolated because it is so hard to find info on this disease.
Me too I am experiencing this. The morning stiffness never goes away, its just mild in the morning with hydroxychloroquine. I am on HCQ for 4 years already and the stiffness never gone, it still is there in the morning, used to be stiffness level 9, but with HCQ its like level 5 on average
I really appreciate that you have shared your story. I have symptoms of lupus, RA etc. I have chronic pain In my joints inflammation everywhere. The Fatigue is like all the energy has been sucked out of me. I have the same issues doing my hair and being able to do anything is like climbing a mountain. I have So many random health problems that are really weird. I have a diagnosis of EOE which is inflammation of the esophagus causing difficulties swallowing and esophageal spasms that feel like a heart attack. Along with a Raynaud’s diagnosis. I Never had any autoimmune labs. My drs never listen to me. I have been dealing with multiple health issues for 20 yrs. The rheumatologist in my area are so behind I have to look to another state for a dr. Yes I am looking for a new PCP. One that actually wants me to feel better! I hope you continue to feel better In your treatment 💕💕
Thank you so much for taking the time to watch and comment! I am so sorry that you are experiencing this gaslighting from medical professionals. I have been there and it's awful. Keep pressing until someone listens and does those labs! Find a new doctor every time if you have to. You deserve better than this. Stay encouraged!
I am a 56 yr Old woman with Lupus, raynauds, sarcoidosis, gastroperesis, esphogeal spasms and MCTD and more. I could have just eaten popcorn and go to eat something else and find I can't swallow. I have to take it out of my mouth, so I don't choke. That happens every now and then. You are not a lone and I am a coloured female. I I try my best to deal with it. Sometimes I forget I have all of this. Until I do something and then I remember. I love to walk, but I find that if I do to much walking. I get spasm through my whole body which hurts badly and If I clean my home. By the next morning. My body feels like someone beat me up. And I have Esophageal spasms = I get very, very sick, with my skin turning grey. But when I do get very, very weak and instead off, to the races. It's off to the ER, with IV and this medicine they give me. And with my Esophageal Spasm could last a week, with just an upset stomach and I can lose 20 pds in a week. I also have white lesions on my brain.
Thank you sooo much for sharing your story. I too have MCTD. My life as been turned upside down completely were sometimes all I could do is cry I've been advocating for myself for a,very long time. Since about 2011 ohh goodness it's a long story. I'm so not happy about all that I've experienced and sometimes not have the right doctor that would really listen and not make you feel it's a mental Health concern .Doctor/patient bedside manner is vital. I embrace you and everyone that is going through this health concerns you have my support ❤
MCTD and UCTD are two different disorders. I have MCTD (mixed connective tissue disorder) as well and sometimes Rheumatologist add a slash mark including both in clinic visit summaries because they aren’t sure which one a person has yet.
True. UCTD is when clinical symptoms are there but the labs don’t support a diagnosis of MCTD (anti RNP+ANA positive). The treatment t is still the same.
Thank you for this video!! It is so similar to my story. I had raynaud's from an early age and have dealt with chronic fatigue since my early teens. I think had many weird symptoms over the years. Rashes, joint pain, headaches, anxiety, IBS-D. I've seen a cardiologist, ENT, gastroenterologist and a few different primary care doctors. My hip started hurting SOO bad to the point that I couldn't walk up stairs. I was so tired from standing (I'm a teacher) I often had to sit down while teaching. I would be so tired when I got home from work I didn't have energy to cook, clean, socialize etc. I got a new primary care doctor and she did a full blood work up including ANA. I had it done through the Quest lab which apparently shows you records of all your past blood work. Turns out I'd tested positive on an ANA test in 2017 BUT NO ONE TOLD ME. My primary at the time never mentioned it! My new doc referred me to a rheumatologist who ordered more blood work. Again I came back ANA positive (fine speckled dense) and RNP positive but negative on all the others. She also ordered some x-rays which revealed I've developed lumbar scoliosis and arthritis of my spine (likely the cause of the hip pain). The x-rays and bloodwork coupled with my symptoms FINALLY led to my MCTD diagnosis last Monday. I was started immediately on Plaquenil and Prednisone. What a world of difference already. It's 2023. I've been living with undiagnosed and untreated autoimmune disease since at least 2017. We must be our own best advocates. I wish a doctor could've helped me sooner and perhaps prevented some of this damage.
Thank you for sharing your story. I have UCTD, along with Celiac and Hashimoto’s. The UCTD and Celiac were diagnosed within a few months of each other, after almost a year of deteriorating. I’d seen my PCP, Rheumatologist, And Gastroenterologist of course, but also an orthopedic surgeon, two neurologists, an ENT, a cardiologist, a physical therapist, a gynecologist, a registered dietitian, a sleep specialist, a psychiatric nurse practitioner, been in the ER twice, and had dozens of expensive tests. It’s amazing how hard it is to diagnose autoimmune problems. I’ve discovered the key for me keeping the UCTD in check is by keeping the celiac in check, because when I get inflammation from any source (like by accidentally eating a crumb of gluten), it spreads through my entire body and I feel it in my joints and muscles before my digestive system even knows there’s a problem. I hope you continue feeling better.
Thank you for sharing your journey. Autoimmune diagnoses are really tough and costly too! I pray that you are well and thank you so much for watching and sharing!
Hi, I’ve had my diagnoses for almost 6 years now of RA, Hashimotos, AS & MCTD. A miscarriage led me there. Still get lonely so every now and then so I search YT for others. Thanks for sharing your story!
I just was diagnosed with UCTD because I have signs and symptoms of 5 different autoimmune diseases and they can’t tell exactly which one I have. If you have MCTD you have symptoms and tests that coralate with Lupus, Polymyositis/Dermatomyositis, and Scleroderma and some have symptoms ofRheumatoid arthritis. There are tests that prove it and antibodies to prove it. There is a difference between UCTD and MCTD. Hope this helps.
Am finally a mother today , because of fibroids my tubes was block for 6years I and my husband was having issue because of my situation no child when I was Searching online on RUclips about fibroids I saw a testimony about dr Omo so I write him and place order for his herbal today I have 2weeks old baby now he can help you too Herb's work like magic. Both on infections
I was diagnosed in May this year after dealing with what I call the "Two and a half flare starring: Sharply Mean". Went 2.5 years before I got diagnosed correctly, thought it was allegies with a side of pain for fun. Anyway, thank you so much for sharing this. I nodded my way through this video like a dashboard bobblehead because my experience mirrors your journey so much.
I sincerely thank you for posting this. Last December, I first heard of this disease. My naturopath has insisted I try the Paleo Autoimmune Protocol (AIP) for 6 months to rule out food allergies and restore gut health. I think it's easier to go on carnivore. Anyway, my symptoms are mostly skin related: I had pityriasis rosea for more than a year. Later, numbness on my hands when I eat gluten or dairy. I will be looking into the medication you take, but I think my best move is to start by changing how I eat sprinkled in with better stress management. God have mercy on us.
I was just diagnosed with MCTD and Celiac disease and it was such a journey getting those diagnosis. The doctors kept insisting I injured myself or my job was the cause. Im still in the process of getting more answers and they haven't ruled out Lupus yet. I'm having a hard time with medications because of the Celiac disease. I knew the American health system was flawed, but I didnt really understand until my own health issues. Thank you for sharing your story. Looking through the comments have me feel not so alone.
What problem with what meds are you having cause of celiac disease? I have UCTD and Dermatomyositis and taking meds but suspected of having celiac and waiting for testing. Does having celiac cause problems with the medications for it?
Hi, thank you for sharing your journey. I have some of the same symptoms and I went to a rheumatologist after 3 weeks of joint pain. She ordered hip, knee, back and neck xrays along with full blood/ urine test. My ANA was negative but my RNP antibody was high. She prescribed Meloxicam but I'm sure a steroid will be next. It is difficult to get out of bed, get out of my car, stand or sit. It just came out of no where so I knew it was an autoimmune disease.
I was diagnosed couple years back but only found a wonderful rheumatologist who fights right along beside me. She listens and isn't just in and out the room in 5 mins shoving a script into my hand and not explaining anything! She sits down and listens never giving up with trying to figure out what might work better. Unfortunately, for some reason, my flares are getting worse and creeping into other joints and areas as well as my kidneys and lymphatic system. When I flare up, my feet and legs swell up so bad that my skin gets tight, itchy and painful as well as redness that feels hot. In my hands and rt elbow, joints are starting to deform and fingers aren't straight. They have "knobby" joints and my rt elbow I can no longer extend my arm out straight. I get extremely tired yet suffer with bouts of insomnia. I have kidney stones as well as mild to moderate kidney disease, ulcerative colitis and I also in the last month or two have started to have tremors in my hands, falling down more frequently. Trying to get back up is pure hell sometimes from the numbness and pain. I get nerve pain in my toes so bad it feels like when you touch something so cold it feels hot. These are just some of the worse symptoms and I unfortunately have the symptoms of multiple autoimmune disease as well as it effecting joints and bones as well as organs in my body. I have days that are so horrible that make me feel so sad and I allow myself to mourn the active woman I used to be. As I tell my hubby, I need to have a pity party, party of 1. Then I wipe my eyes and stand up to fight this disease and not let it win. I also take prednisone, plaquenil and I inject myself with methotrexate once a week because my stomach couldn't tolerate pill form and it triggered a bleeding ulcer to open up again. And that is definitely not fun times!! Wow, sorry for making this so long. I literally teared up when I watched this because you feel so isolated and alone sometimes. People look at you and say how you look fine to them. They don't understand that it is on the inside that starts it or they don't get the fact that it's chronic and you'll never be cured, but can hope for the flares to be shorter and longer times between them. Oh well, I'm so glad I found your video and people that understand because they are going thru it also. Thank you for sharing your journey and hope that things are still well for you.
I was also Diagnosed with CTD August 2021 and placed on the same Medications...The steroids did help...I am just Just on the Plaquenil and have steroids just in case I have a flare... I had a positive ANA, SSA AND SSB tests...I have also been diagnosed with osteoporosis in my lumbar spine and deficient in Vitamin D.
Am finally a mother today , because of fibroids my tubes was block for 6years I and my husband was having issue because of my situation no child when I was Searching online on RUclips about fibroids I saw a testimony about dr Omo so I write him and place order for his herbal today I have 2weeks old baby now he can help you too Herb's work like magic. Both on infections
Thanks for sharing your story. I’ve been suffering with sore feet and ankles with pitting edema on my left ankle for months it resolved finally only to have some kind of flair up in my right foot that was so severe I couldn’t walk for 24 hours. My PCP was all over it once I showed her the MRI report of my right foot. I assumed I had gout for some reason and was surprised when she called me within a few hours of my blood work and foot x-rays to tell me about something I wasn’t expecting. I had a Positive ANA and was positive for RNP antibodies. I get all my healthcare through the VA and I’m being referred to rheumatology. I workin the medical field as an MRI Technologist but don’t know how aggressive I should be treating this disease process based on the amount of bony erosion and cystic lesions I have in at least one of my feet. My clinical findings seem consistent with MCTD just like the testing shows. Everything else on the extensive panel was negative. Including a negative CBC. Do you know if it’s better to treat the inflammation and bone loss aggressively like with Methotrexate? I have so many specific questions about the treatment(s) and no specialist yet to ask. I found this flow chart for testing from the Mayo Clinic I was tested for everything below the ANA and additionally tested positive for the RNP antibodies but I hope this helps someone who wants to understand what test shows what. www.mayocliniclabs.com/~/media/it-mmfiles/special-instructions/Connective_Tissue_Disease_Cascade__CTDC_.pdf
Girlll your story is so similar to mine! I saw my primary care, orthopedist, ENT, and now finally a rheumatologist. I finally feel like I’m getting closer to an answer. C reactive protein was high, ANA came back positive, rheumatoid factor in normal range but literally only needs to go up by one number to be out of range. DNA came back out of range but undetermined. I look fine from the outside but I’m constantly in pain and always fatigued. Im hoping methotrexate will help and your story has given me more hope!
Hey luv.. thank you for sharing, I was diagnosed in 2018 with MCTD and was put on the same meds but had to go off of it because the side effects were too much, needless to say I’ve been without meds since late 2018.. I also have a kidney disease (nephrocalcinosis) and bladder disease (interstitial cystitis), osteoarthritis and polymyositis .. I’ll be praying for you 🖤
Thank you for sharing. I was recently diagnosed with MCTD. So many ER visits...so many doctors and no answers. FINALLY a reason why I have felt so terrible for so many years. Currently on steroids and on the journey to regaining my life. Maybe one day I will have the guts to share my story and try to help others like you have. Best wishes!
So I was just diagnosed MCTD but it has been an extremely frustrating process. I've suffering for 3 years being pushed from specialist to specialist I was just prescribed hydroxychloroquine from my rheumatologist. Although I'm extremely nervous about the side effects I need some relief. Thanks for sharing your story.
Same here with getting diagnosis. I've been taking Hydroxchloroquine for three years. Side effects almost nonexistent for me. Took a few months to kick in but has made a world of difference. 200mg twice a day was initial dosage. I worked my way down to just one 200 mg pill a day and have settle in at alternating 400mg one day 200 mg next day. Limiting foods high in gluten has helped as well.
Thank you for sharing. I'm happy you're feeling much better. Everything you mentioned is what I've been dealing with for years. I just got a positive ana test result. Thank you so much. Peace, blessings, and good health to you .
thank you SO much for this video. I am having similar troubles, it hurts my fingers to type or play guitar now which makes me so sad... I am seeing a rheum in a month and so hopeful. Thank you for sharing this difficult experience. We're all there with you
Thanks for sharing your story. I was recently diagnosed with MCTD, however, my Rheumatologist suggested that I had Lupus traits as well due to other symptoms I've dealt w/for over 3 decades: Alopecia, AVN that resulted in a total Hip replacement 2 yrs ago, chronic joint pain & photosensitivity. I was prescribed Plaquenil (Hydroxychloroquine). I'm hopeful that I'll have some relief in a couple of months.
My story is on above yours. I suffer from alopecia also, with more autoimmune disease. Predisone doesn't work and neither does Hydroxq. I've been going through this for 14yrs. And at one point. I lost all the hair on my body. My hair is trying to grow back after all those years. Thanks to TMH.
Thank you so much for sharing your story. I have a rheumatology appt next month. I've had various and somewhat vague symptoms similar to yours for years. I recently saw my primary for Raynaud's symptoms and she said, why don't we do an ANA just to be sure there's nothing else. Lo and behold I have multiple antibodies including RNP, which definitely is making some sense of all my symptoms that I have disregarded for the past 10 years or so. Praying for you on your continued journey. Your video has given me some encouragement and insight.
I was diagnosed with this and more. Something told me to dig deeper, I’m more into root cause medicine. So, I went to a functional medicine doc. We ran some functional labs. All along it was Lyme Disease and Mold Toxicity. After 2 years detoxing, my symptoms have greatly reduced. So have my ANA markers. My rheumatologist basically just told me to keep doing what I’m doing. 🙄
Thanks for posting this video. This disease sometimes makes me feel like" it's all in my head"....and every other part of my body. Lol. It is a tough journey for a diagnosis, my primary care physician kept sending me to orthopedist or physical therapy, until I said I want a Rheumatoid blood work panel done. Came back ANA positive. 1st Rheumatologist diagnosis me with MCTD and said I should have about 5 to 10 years of near normal life. started me out on prednisone and Plaquenil. Second opinion Rheumatologist changed diagnosis to UCTD, cut out prednisone and went with just 200mg Hydroxychloroquine twice a day (I kept her). I don't feel fine, but much better. We fiddled with lowering the dosage until I settle in on alternating between 200mg and 400 mg every other day. (Cutting the pills in half were another option), added in turmeric and try to eliminate high gluten foods. Lupus symptoms in warmer months, RA symptoms in Winter. Rheumatologist says there's 1/3 chance it goes into remission, 1/3 it stays like this, 1/3 chance it becomes much worse. I'm okay with those odds. I had a mild breakthrough COVID infection, but Connective Tissue disease didn't get worse during that time or since. At this time, somedays I wake up fine and other days I wake up feeling like I had lifted weights for the first time in my life the day before.
Have you taken it a step further and considered a potential hypermobile Ehlers-Danlos condition that is the underlying or maybe overarching contributor to all of this yet? Doctors do treat symptoms and you do need one that’s going to help you find those treatments but a diagnosis of what’s driving all of those symptoms can ultimately be the most important step in the search in the seeking. And this does lead to so much more suffering than is necessary. Thank you for considering sharing your story. On a similar but different paths I remember when my youngest child he didn’t meet all of the diagnostic markers early to be given a diagnosis of autism and the psychological field but then as he aged in progress he was eventually given that diagnosis so he had to be given a diagnosis of originally with no specific disorder and other words I can’t really label it yet because it doesn’t check all the marks but it checks many of the marks. Come back protocol as this ages or progresses. No definitive, due to lesser presentation. Way back then I had never heard of autism or Asperger’s and didn’t know what I was saying and I pretty much had to depend on the doctors in both medical and psychological world to give me good answers but the truth was they really didn’t. The markers never being quite severe enough yet the stack of markers quite extensive. Sadly this condemned land to the medical profession and well all people does think that the conditions are psychological versus medically-based which is so often just not true. And sadly doctors unless a marker is just kind of really off the charts they tend to discount them and maybe not look for patterns and maybe they don’t mention it to the patient or say we need to watch this come back let’s test this let’s see how this progresses to give you a heads up that you need to definitely keep after your quest they kind of make a silent mental or maybe even a little silent note in your chart but they don’t stress it with the patient. So he won’t stay long for quite a while with his autism diagnosis yet and anyways it just didn’t seem to be a full match kind of a match so it was questioned and discounted and yeah we’re not really sure. But as time evolved so much of the drivers seem to be medically biologically grounded and founded versus just a different neurological sub type of human. And attempting to figure out all of the medical issues that were being categorized as psychological issues in advertently mistakenly due to the lack of knowledge we eventually as things progress two more serious levels on all aspects on all fronts landed into the before unknown world of Ehlers-Danlos syndrome. It truly took a young man who had a severe form of Ehlers-Danlos to engage in a casual conversation and observation of me and my children and he connected all the dots he knew all the right questions that a medical honor doctor and a psychological doctor didn’t seem to have the foresight and knowledge to ask to discern to delve into deeply but because he lived with it on a severe level and he knew what he was looking at he was able to ask those questions so it’s pertinent questions and drill down into the nuances and he was forward enough to say have you ever heard of this condition and have you considered it you might want to do a little research on your own. And that started a whole new journey of discovery and realizing that the genetics in our family had led to an increase in incidents of diagnosis of autism and today the research shows that so many with hypermobile Ehlers-Danlos syndrome are diagnosed autistic and just a whole host of other diagnosis before they ever get to the genetic mutation that is driving the whole thing which is Ehlers-Danlos Nassau activation syndrome pastoral orthostatic tachycardia and leading to these autoimmune presentations… And potentially the neurology that develops overtime living with a pain condition that impacts the signaling in the body due to hyper mobile loose joints and proprioception issues that would form the neurology of someone diagnosed with autism
Thank you for sharing! I get these horrible rashes also. But on my face and entire torso. Horrible, itchy, scarring, peeling....And they take forever to heal. Then there's my shoulders and arms. I am afraid I could lose use of my arms. The pain in the shoulders and now elbow has me scared to move. Trying to sleep is torture. At least I have a name for it all😏
@@LadyLibra-kp8ox You can scrape your leg and boom. It turns into a sore. Your skin is your enemy. But I bought this make up where you can't see any scares and it does come off. I have not used it yet. Its for a special occasion, with my husband.
I walked out of the doctors yesterday in tears because the doctor said " I believe you have symptoms but I don't believe there's anything wrong with you. Some things just can't be explained." So.... you don't believe I have symptoms then? Chronic diarea for over a year, break outs in rashes, numbness in my left leg that travelled up to my hip when I got really sick, pain and blurred vision when moving my right eye, severe shoulder/back/neck and hip pain. Apparently it's all in my head. Burning when I walk. If I don't have any autoimmune disease, like they believe they could atleast see if I've pinched a nerve or something to explain the pain, numbness and tingling in my right shoulder and left leg, but no. I've given up all my unhealthy habits, I've quit smoking, I'm taking vitamins and eating healthy but nothing helps. I have good days and bad days, when the bad days are bad, they are BAD. I feel like I'm losing my mind. Maybe it is all in my head? I dont even know anymore. The NHS in the UK is actually so not even worth it. They're so snowed under they don't help people unless they are literally on deaths door. So I guess I'll just have to wait until something really bad happens or just live in pain for the rest of my life with no help. I am only 31 and have 2 young children, I shouldn't feel this way, it's not normal.
I’m sorry you are going through this through this. I went 20 years without a diagnosis and always got blown off by drs. Did they test your ANA? None of my drs did and I found an online lab where I could order my own bloodwork. The ANA was positive for me. This is how I finally got referred to a rheumatologist. I also want to mention to be careful about the vitamins. Research what vitamins are bad for autoimmune disease. Anything that boosts the immune system can wreck havoc on someone with autoimmune disease. Trust your gut and keep trying. I believe you 🤍
@thewanderingstarseed they have done an ANA and it all came back clear, since writing this I had more symptoms and illness that finally got them to refer me to a neurologist. I have started to go to the gym and my joints are really suffering from it but I'm persevering so they can rake me seriously. When I work out I get blurred vision and I'm still breaking out in rashes and have a lot of pain and numbness. Thanks so much for believing me, I feel like no one else (other than my partner who sees everything I'm going through) does. My referral letter the sent the neurologist was so bad. I'm pretty sure they won't take me seriously with a referral like that! But I will have to wait and see, it's not untill November so finger's crossed I don't get sick again in the mean-time. Thank you for your support and advice ❤
I have everything the same. Like I listem yself on that your video. I expecting my exams form rezmatollogist, and than we will know what is. For now its lupus, but, I have just like you everything else. But my UV (ultra violent) alergic is for lupus, RF is negative, but I have osteoartritis, lordozis, spondilozis. Its now almost 10 years of searching what is to me, but few mounths with my reumatologist. And now she is on the way to now what is going on. And I expecting my other exames (ANA, ENA, dsDNA) and than we will now.. but I cant enymore, I'm so exausted.. arms, legs, shoulders, back, tired, etc. But I live for the day of threatment for disese.
I’m still struggling with possibly MCTD undiagnosed by a rheumatologist but two pcps agreed it may be that that I’m having issues with. the worst is the fatigue that sometimes keeps me in bed! But I also have balance issues. I have tried different things to feel better and the only time I do feel “good” is after I wake up from a good nights sleep. Other than that I feel “sick” constantly. I don’t like medications so I’m worried that I have to take anything but I’m hoping I can find a natural alternative.
I found a doctor and I got refered to the rheumatology place here in the city I live in but it was a 5 month wait and they sent me a message saying they've been trying to contact me about rescheduling the appointment that was supposed to be Feb 14th to get tests done bc like you I got the same results of ra being high so I haven't called them yet and it's been almost a month bc that's how mad I am about it and I don't think my doctor's office knows about it bc they haven't tried to call me and they're supposed to help with some of the symptoms until I got into the rheumatology place.... Anyway I'm calling them tomorrow so yeah wish me luck and thank you for your story ❤
Tytyty!!! My doctor just keeps telling me, "but your ana is neg. Nothing is wrong". They are only human, but I do wish they would be a little more open to possibilities. Thanks again.
I was diagnosed with MCTD in 2018. I had just started a new job and separating from my husband. My first symptom was mass on my neck it was huge the hospital thought it was cancer the day I was going into surgery it started to disappear. Than I had a fever bladder infection and kidney infection. I typed alot at work. My hands started locking up I had bad shortness of breath extreme joint pain headaches rashes all over my body and face sores on my scalp I lost all my hair eye lashes eye brows. I started missing so much work because of frequent hospital visits. By the end of 2018 I had to be admitted for 10 days they took arm pit samples of my lymph nodes after positive results they said lupus but continued testing xrays scans MRI soon I was diagnosed with MCTD. I got better for a while after I started taking the meds. But more symptoms came blurred vision gastroparies symptoms and siezures. Living with this is so hard sometimes I'm like why me? I still haven't got my flares under control and now its attacking my lungs and liver
Michelle, that sounds horrible and so frustrating! I'm early in my journey, but I've managed to decrease many symptoms with an autoimmune diet. It's high in nutrients, low in inflammatory ingredients and maybe it could help some of your symptoms. If you aren't familiar with it, this is a great place to start: www.thepaleomom.com/start-here/the-autoimmune-protocol/ Health and healing to you!
I have a question, I am going thru the same thing almost to the T but have weird cold fingers and nuckles once in a while that turn white ? I was wondering what is an end? my doctor explained that I have a positive ANA but they never brought up anything about RP is that the rheumatoid factor when they discussed that with me they never say whether it’s high or low they just say that it was negative but yet my ANA is positive and I have, a lot of lung issues and joint pain and Stephanie, severe swelling and limbs. This is the most confusing disease ever. I get bacterial pneumonia a lot as well ??
My mom is recently diagnosed with MCTD can you please say anything my mom pain is not goin away even after having so mny painkillers as prescribed by dr
My doctor gave me a bunch of bs tests I kept begging and she finally did an ana. It was positive speckled pattern 1:1280. I have to wait 4 months to see a rheumatologist. I had no idea she could have possibly diagnosed me or given me more tests in the meantime. She didn't even want to explain my results. She said your ana was positive so I'm referring. I had to ask her what the results meant. I have an appt next month with an internal medicine doctor,hoping I will receive better care
Primary Care docs can't diagnose autoimmune disease. Sometime Rheumatologists can't even diagnose Lol The ANA can mean many things or even nothing. Its a lot of extensive anti body panels and other testing needed that PCPs do not have knowledge of and some of them can't even order tests beyond the ANA since they aren't a Rhuem. With that being said healthcare still sucks. They don't care, it's sad how we have to go behind them and do our own due diligence and/or they push you off on another doc.
I’ve had this issue for 3 years before being diagnosed with Undifferentiated Connective Tissue Disease. I take Hydroxychloroquine and it has helped me immensely
Hey Lacey thank you so much for sharing and making this video! I am currently getting diagnosed with MCTD and its really hard. I really understood you video and took in your recommendations. How are you feeling now? How is the medication treating you? Did you do any changes in diet? Thanks!
hey Ana T,how are you ? how you doing ? 1 day back got diagnosed with MCTD ☹️, how is the doctor is treating you ? what medication are prescribed you? @Ana T .God bless you
Am finally a mother today , because of fibroids my tubes was block for 6years I and my husband was having issue because of my situation no child when I was Searching online on RUclips about fibroids I saw a testimony about dr Omo so I write him and place order for his herbal today I have 2weeks old baby now he can help you too Herb's work like magic. Both on infections
I sometimes wonder if I will be on them for the rest of my life but very grateful that they have so dramatically improved my quality of life and enabled me to be present and well for my family.
@Tyler Tylier I have MCTD and regularly have muscle twitching, pain and spasms along with joint and nerve pain, and occasional mild skin rashes that pop up out of no where.
It's sad there are no pain meds allowed for mctd and we are treated liike drug seekers. My life is an agony with ic and headaches. They want to prescribe expensive biologicals that I can't afford. I'm allergic to steroids and was given them by mistake at pain management.l suffer from severe osteoporosis and PTS andI don't trust anyone now.
Have you looked into infectious causes or toxins? I’m suffering terribly now with a severe and undiagnosed CTD involving neuro and atrophy. I also have nothing on MRI. I tested positive for a few different antibodies but nothing that matched the criteria (NMO, anti-parietal cell, anti cardio lipid). However…I tested positive for Lyme Disease and several other co-infections. I also have had some exposures in the military, including black mold (mycotoxins). I’ve probably seen about 100 doctors myself and am in the hospital now. Don’t feel too hopeful…but wanted to share my situation. A year and a half ago, I was super fit and active…painfully losing ground (nightmare) ever since. I can’t even sit up anymore due to connective tissue failure.
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Thank you for sharing. I was diagnosed with MCTD and sjogren. Initially I would experience loss of breath (like my lungs were closed) sore throat, dry patches around my hairline, chest and shoulders, a fever and headache that would not go away even with meds and SEVERE fatigue. I felt like my blood was heavy and weighted so I couldn't move without difficulty. Thank God I found a rheumatologist who listens. Today I'm not on any meds. My diet is (mostly) gluten free and plant-based. I stay away from inflammatory foods. But most importantly I decrease and stay away from STRESS! That is the number 1 trigger of a flare up for me. Praying for you all to have phenomenal healing and radiant health!🙏🏾
Thanks 🙏
Wow 😮!!!! I wish I can get ur # lol this is the way I want to heal!
No meds?
I was diagnosed with MCTD last year and it was the most difficult thing I had to go through. I was given the same medications; steroid and hydroxychloroquine. I remembered when I was diagnosed I was searching for people or community with similar story. Thank you for sharing your story. I am currently on hydroxychloroquine but experience mild stiffness in the joint of my fingers at morning, and it gets better as the day progresses.
So glad that you are feeling better. I know how it feels to look for information and feel somewhat isolated because it is so hard to find info on this disease.
Me too I am experiencing this. The morning stiffness never goes away, its just mild in the morning with hydroxychloroquine. I am on HCQ for 4 years already and the stiffness never gone, it still is there in the morning, used to be stiffness level 9, but with HCQ its like level 5 on average
I really appreciate that you have shared your story. I have symptoms of lupus, RA etc. I have chronic pain In my joints inflammation everywhere. The Fatigue is like all the energy has been sucked out of me. I have the same issues doing my hair and being able to do anything is like climbing a mountain. I have So many random health problems that are really weird. I have a diagnosis of EOE which is inflammation of the esophagus causing difficulties swallowing and esophageal spasms that feel like a heart attack. Along with a Raynaud’s diagnosis. I Never had any autoimmune labs. My drs never listen to me. I have been dealing with multiple health issues for 20 yrs. The rheumatologist in my area are so behind I have to look to another state for a dr. Yes I am looking for a new PCP. One that actually wants me to feel better! I hope you continue to feel better In your treatment 💕💕
Thank you so much for taking the time to watch and comment! I am so sorry that you are experiencing this gaslighting from medical professionals. I have been there and it's awful. Keep pressing until someone listens and does those labs! Find a new doctor every time if you have to. You deserve better than this. Stay encouraged!
I am a 56 yr Old woman with Lupus, raynauds, sarcoidosis, gastroperesis, esphogeal spasms and MCTD and more. I could have just eaten popcorn and go to eat something else and find I can't swallow. I have to take it out of my mouth, so I don't choke. That happens every now and then.
You are not a lone and I am a coloured female. I I try my best to deal with it. Sometimes I forget I have all of this. Until I do something and then I remember. I love to walk, but I find that if I do to much walking. I get spasm through my whole body which hurts badly and If I clean my home. By the next morning. My body feels like someone beat me up. And I have Esophageal spasms = I get very, very sick, with my skin turning grey. But when I do get very, very weak and instead off, to the races. It's off to the ER, with IV and this medicine they give me. And with my Esophageal Spasm could last a week, with just an upset stomach and I can lose 20 pds in a week.
I also have white lesions on my brain.
Thank you sooo much for sharing your story. I too have MCTD. My life as been turned upside down completely were sometimes all I could do is cry I've been advocating for myself for a,very long time. Since about 2011 ohh goodness it's a long story. I'm so not happy about all that I've experienced and sometimes not have the right doctor that would really listen and not make you feel it's a mental Health concern .Doctor/patient bedside manner is vital. I embrace you and everyone that is going through this health concerns you have my support ❤
What treatment did you get from your dr
MCTD and UCTD are two different disorders. I have MCTD (mixed connective tissue disorder) as well and sometimes Rheumatologist add a slash mark including both in clinic visit summaries because they aren’t sure which one a person has yet.
True. UCTD is when clinical symptoms are there but the labs don’t support a diagnosis of MCTD (anti RNP+ANA positive). The treatment t is still the same.
I came to say this :)
Thank you for this video!! It is so similar to my story. I had raynaud's from an early age and have dealt with chronic fatigue since my early teens. I think had many weird symptoms over the years. Rashes, joint pain, headaches, anxiety, IBS-D. I've seen a cardiologist, ENT, gastroenterologist and a few different primary care doctors.
My hip started hurting SOO bad to the point that I couldn't walk up stairs. I was so tired from standing (I'm a teacher) I often had to sit down while teaching. I would be so tired when I got home from work I didn't have energy to cook, clean, socialize etc.
I got a new primary care doctor and she did a full blood work up including ANA. I had it done through the Quest lab which apparently shows you records of all your past blood work.
Turns out I'd tested positive on an ANA test in 2017 BUT NO ONE TOLD ME. My primary at the time never mentioned it!
My new doc referred me to a rheumatologist who ordered more blood work. Again I came back ANA positive (fine speckled dense) and RNP positive but negative on all the others. She also ordered some x-rays which revealed I've developed lumbar scoliosis and arthritis of my spine (likely the cause of the hip pain). The x-rays and bloodwork coupled with my symptoms FINALLY led to my MCTD diagnosis last Monday. I was started immediately on Plaquenil and Prednisone. What a world of difference already.
It's 2023. I've been living with undiagnosed and untreated autoimmune disease since at least 2017.
We must be our own best advocates. I wish a doctor could've helped me sooner and perhaps prevented some of this damage.
Thank you for sharing your story. I have UCTD, along with Celiac and Hashimoto’s. The UCTD and Celiac were diagnosed within a few months of each other, after almost a year of deteriorating. I’d seen my PCP, Rheumatologist, And Gastroenterologist of course, but also an orthopedic surgeon, two neurologists, an ENT, a cardiologist, a physical therapist, a gynecologist, a registered dietitian, a sleep specialist, a psychiatric nurse practitioner, been in the ER twice, and had dozens of expensive tests. It’s amazing how hard it is to diagnose autoimmune problems.
I’ve discovered the key for me keeping the UCTD in check is by keeping the celiac in check, because when I get inflammation from any source (like by accidentally eating a crumb of gluten), it spreads through my entire body and I feel it in my joints and muscles before my digestive system even knows there’s a problem.
I hope you continue feeling better.
Thank you for sharing your journey. Autoimmune diagnoses are really tough and costly too! I pray that you are well and thank you so much for watching and sharing!
Hi, I’ve had my diagnoses for almost 6 years now of RA, Hashimotos, AS & MCTD. A miscarriage led me there. Still get lonely so every now and then so I search YT for others. Thanks for sharing your story!
Sending love and positivity your way. Thank you for watching!
@@LaceyAlanna How are you doing now hope all is well! ❤️
I just was diagnosed with UCTD because I have signs and symptoms of 5 different autoimmune diseases and they can’t tell exactly which one I have. If you have MCTD you have symptoms and tests that coralate with Lupus, Polymyositis/Dermatomyositis, and Scleroderma and some have symptoms ofRheumatoid arthritis. There are tests that prove it and antibodies to prove it. There is a difference between UCTD and MCTD. Hope this helps.
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I was diagnosed in May this year after dealing with what I call the "Two and a half flare starring: Sharply Mean". Went 2.5 years before I got diagnosed correctly, thought it was allegies with a side of pain for fun. Anyway, thank you so much for sharing this. I nodded my way through this video like a dashboard bobblehead because my experience mirrors your journey so much.
I sincerely thank you for posting this. Last December, I first heard of this disease. My naturopath has insisted I try the Paleo Autoimmune Protocol (AIP) for 6 months to rule out food allergies and restore gut health. I think it's easier to go on carnivore. Anyway, my symptoms are mostly skin related: I had pityriasis rosea for more than a year. Later, numbness on my hands when I eat gluten or dairy.
I will be looking into the medication you take, but I think my best move is to start by changing how I eat sprinkled in with better stress management.
God have mercy on us.
I was just diagnosed with MCTD and Celiac disease and it was such a journey getting those diagnosis. The doctors kept insisting I injured myself or my job was the cause. Im still in the process of getting more answers and they haven't ruled out Lupus yet. I'm having a hard time with medications because of the Celiac disease. I knew the American health system was flawed, but I didnt really understand until my own health issues. Thank you for sharing your story. Looking through the comments have me feel not so alone.
What problem with what meds are you having cause of celiac disease? I have UCTD and Dermatomyositis and taking meds but suspected of having celiac and waiting for testing. Does having celiac cause problems with the medications for it?
Hi, thank you for sharing your journey. I have some of the same symptoms and I went to a rheumatologist after 3 weeks of joint pain. She ordered hip, knee, back and neck xrays along with full blood/ urine test. My ANA was negative but my RNP antibody was high. She prescribed Meloxicam but I'm sure a steroid will be next. It is difficult to get out of bed, get out of my car, stand or sit. It just came out of no where so I knew it was an autoimmune disease.
Hoping that your treatment is working!
I was diagnosed couple years back but only found a wonderful rheumatologist who fights right along beside me. She listens and isn't just in and out the room in 5 mins shoving a script into my hand and not explaining anything! She sits down and listens never giving up with trying to figure out what might work better. Unfortunately, for some reason, my flares are getting worse and creeping into other joints and areas as well as my kidneys and lymphatic system. When I flare up, my feet and legs swell up so bad that my skin gets tight, itchy and painful as well as redness that feels hot. In my hands and rt elbow, joints are starting to deform and fingers aren't straight. They have "knobby" joints and my rt elbow I can no longer extend my arm out straight. I get extremely tired yet suffer with bouts of insomnia. I have kidney stones as well as mild to moderate kidney disease, ulcerative colitis and I also in the last month or two have started to have tremors in my hands, falling down more frequently. Trying to get back up is pure hell sometimes from the numbness and pain. I get nerve pain in my toes so bad it feels like when you touch something so cold it feels hot. These are just some of the worse symptoms and I unfortunately have the symptoms of multiple autoimmune disease as well as it effecting joints and bones as well as organs in my body. I have days that are so horrible that make me feel so sad and I allow myself to mourn the active woman I used to be. As I tell my hubby, I need to have a pity party, party of 1. Then I wipe my eyes and stand up to fight this disease and not let it win. I also take prednisone, plaquenil and I inject myself with methotrexate once a week because my stomach couldn't tolerate pill form and it triggered a bleeding ulcer to open up again. And that is definitely not fun times!! Wow, sorry for making this so long. I literally teared up when I watched this because you feel so isolated and alone sometimes. People look at you and say how you look fine to them. They don't understand that it is on the inside that starts it or they don't get the fact that it's chronic and you'll never be cured, but can hope for the flares to be shorter and longer times between them. Oh well, I'm so glad I found your video and people that understand because they are going thru it also. Thank you for sharing your journey and hope that things are still well for you.
You are truly inspirational! thank you for watching! I hope you are well.
I have also been diagnosed with MCTD a month back.
dont worry dear....we will be fine, InshaAllah
just b positive n happy
Thank you for sharing your experience. God bless you.🙏🙏🙏
I was also Diagnosed with CTD August 2021 and placed on the same Medications...The steroids did help...I am just Just on the Plaquenil and have steroids just in case I have a flare... I had a positive ANA, SSA AND SSB tests...I have also been diagnosed with osteoporosis in my lumbar spine and deficient in Vitamin D.
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Am finally a mother today , because of fibroids my tubes was block for 6years I and my husband was having issue because of my situation no child when I was Searching online on RUclips about fibroids I saw a testimony about dr Omo so I write him and place order for his herbal today I have 2weeks old baby now he can help you too Herb's work like magic. Both on infections
Thanks for sharing your story. I’ve been suffering with sore feet and ankles with pitting edema on my left ankle for months it resolved finally only to have some kind of flair up in my right foot that was so severe I couldn’t walk for 24 hours. My PCP was all over it once I showed her the MRI report of my right foot. I assumed I had gout for some reason and was surprised when she called me within a few hours of my blood work and foot x-rays to tell me about something I wasn’t expecting. I had a Positive ANA and was positive for RNP antibodies. I get all my healthcare through the VA and I’m being referred to rheumatology. I workin the medical field as an MRI Technologist but don’t know how aggressive I should be treating this disease process based on the amount of bony erosion and cystic lesions I have in at least one of my feet. My clinical findings seem consistent with MCTD just like the testing shows. Everything else on the extensive panel was negative. Including a negative CBC. Do you know if it’s better to treat the inflammation and bone loss aggressively like with Methotrexate? I have so many specific questions about the treatment(s) and no specialist yet to ask. I found this flow chart for testing from the Mayo Clinic I was tested for everything below the ANA and additionally tested positive for the RNP antibodies but I hope this helps someone who wants to understand what test shows what. www.mayocliniclabs.com/~/media/it-mmfiles/special-instructions/Connective_Tissue_Disease_Cascade__CTDC_.pdf
Girlll your story is so similar to mine! I saw my primary care, orthopedist, ENT, and now finally a rheumatologist. I finally feel like I’m getting closer to an answer. C reactive protein was high, ANA came back positive, rheumatoid factor in normal range but literally only needs to go up by one number to be out of range. DNA came back out of range but undetermined. I look fine from the outside but I’m constantly in pain and always fatigued. Im hoping methotrexate will help and your story has given me more hope!
Hey luv.. thank you for sharing, I was diagnosed in 2018 with MCTD and was put on the same meds but had to go off of it because the side effects were too much, needless to say I’ve been without meds since late 2018.. I also have a kidney disease (nephrocalcinosis) and bladder disease (interstitial cystitis), osteoarthritis and polymyositis .. I’ll be praying for you 🖤
Thank you so much! God bless you. Hoping that you are healed and get treatment that works for you.
Thank you for sharing. I was recently diagnosed with MCTD. So many ER visits...so many doctors and no answers. FINALLY a reason why I have felt so terrible for so many years. Currently on steroids and on the journey to regaining my life. Maybe one day I will have the guts to share my story and try to help others like you have. Best wishes!
Thank you for sharing and I hope you are doing better!
So I was just diagnosed MCTD but it has been an extremely frustrating process. I've suffering for 3 years being pushed from specialist to specialist I was just prescribed hydroxychloroquine from my rheumatologist. Although I'm extremely nervous about the side effects I need some relief. Thanks for sharing your story.
Same here with getting diagnosis. I've been taking Hydroxchloroquine for three years. Side effects almost nonexistent for me. Took a few months to kick in but has made a world of difference. 200mg twice a day was initial dosage. I worked my way down to just one 200 mg pill a day and have settle in at alternating 400mg one day 200 mg next day. Limiting foods high in gluten has helped as well.
Thank you for sharing. I'm happy you're feeling much better. Everything you mentioned is what I've been dealing with for years. I just got a positive ana test result. Thank you so much. Peace, blessings, and good health to you .
thank you SO much for this video. I am having similar troubles, it hurts my fingers to type or play guitar now which makes me so sad... I am seeing a rheum in a month and so hopeful. Thank you for sharing this difficult experience. We're all there with you
I was diagnosed with MS in March 2020. Love that you have had the courage to share your story. I am getting there
Thank you so much! People need to hear your story so hoping that you are able to share one day.
Thanks for sharing your story. I was recently diagnosed with MCTD, however, my Rheumatologist suggested that I had Lupus traits as well due to other symptoms I've dealt w/for over 3 decades: Alopecia, AVN that resulted in a total Hip replacement 2 yrs ago, chronic joint pain & photosensitivity. I was prescribed Plaquenil (Hydroxychloroquine). I'm hopeful that I'll have some relief in a couple of months.
My story is on above yours. I suffer from alopecia also, with more autoimmune disease. Predisone doesn't work and neither does Hydroxq. I've been going through this for 14yrs. And at one point. I lost all the hair on my body. My hair is trying to grow back after all those years. Thanks to TMH.
Thank you so much for sharing your story. I have a rheumatology appt next month. I've had various and somewhat vague symptoms similar to yours for years. I recently saw my primary for Raynaud's symptoms and she said, why don't we do an ANA just to be sure there's nothing else. Lo and behold I have multiple antibodies including RNP, which definitely is making some sense of all my symptoms that I have disregarded for the past 10 years or so. Praying for you on your continued journey. Your video has given me some encouragement and insight.
You did a good job. This video was on point.❤
I was diagnosed with this and more. Something told me to dig deeper, I’m more into root cause medicine. So, I went to a functional medicine doc. We ran some functional labs. All along it was Lyme Disease and Mold Toxicity. After 2 years detoxing, my symptoms have greatly reduced. So have my ANA markers. My rheumatologist basically just told me to keep doing what I’m doing. 🙄
I am too diagnosed what should I do
Thank you so much for posting this! I am ana positive and have rnp antibodies. I'm exhausted! I'm waiting to get in to the rheumatologist....
Thank you for watching and good luck! I hope you get the answers and treatment you need to improve your symptoms!
Thank you girl, I was shocked to hear you name off the same issues I have been going thru, Good luck to you
Thank you I just got diagnosed and I feel horrible 😢.
Thanks for posting this video. This disease sometimes makes me feel like" it's all in my head"....and every other part of my body. Lol.
It is a tough journey for a diagnosis, my primary care physician kept sending me to orthopedist or physical therapy, until I said I want a Rheumatoid blood work panel done. Came back ANA positive. 1st Rheumatologist diagnosis me with MCTD and said I should have about 5 to 10 years of near normal life. started me out on prednisone and Plaquenil. Second opinion Rheumatologist changed diagnosis to UCTD, cut out prednisone and went with just 200mg Hydroxychloroquine twice a day (I kept her). I don't feel fine, but much better. We fiddled with lowering the dosage until I settle in on alternating between 200mg and 400 mg every other day. (Cutting the pills in half were another option), added in turmeric and try to eliminate high gluten foods. Lupus symptoms in warmer months, RA symptoms in Winter. Rheumatologist says there's 1/3 chance it goes into remission, 1/3 it stays like this, 1/3 chance it becomes much worse. I'm okay with those odds. I had a mild breakthrough COVID infection, but Connective Tissue disease didn't get worse during that time or since. At this time, somedays I wake up fine and other days I wake up feeling like I had lifted weights for the first time in my life the day before.
thank you so much for sharing ,how are you feeling now? wish you for the best healthy life ,God bless you
@@marinawillow8756 I'm doing well. I'm having sleep issues, that I'm trying to work through. Thank you for asking. Hope you are well.
Have you taken it a step further and considered a potential hypermobile Ehlers-Danlos condition that is the underlying or maybe overarching contributor to all of this yet?
Doctors do treat symptoms and you do need one that’s going to help you find those treatments but a diagnosis of what’s driving all of those symptoms can ultimately be the most important step in the search in the seeking.
And this does lead to so much more suffering than is necessary.
Thank you for considering sharing your story.
On a similar but different paths I remember when my youngest child he didn’t meet all of the diagnostic markers early to be given a diagnosis of autism and the psychological field but then as he aged in progress he was eventually given that diagnosis so he had to be given a diagnosis of originally with no specific disorder and other words I can’t really label it yet because it doesn’t check all the marks but it checks many of the marks. Come back protocol as this ages or progresses. No definitive, due to lesser presentation. Way back then I had never heard of autism or Asperger’s and didn’t know what I was saying and I pretty much had to depend on the doctors in both medical and psychological world to give me good answers but the truth was they really didn’t. The markers never being quite severe enough yet the stack of markers quite extensive. Sadly this condemned land to the medical profession and well all people does think that the conditions are psychological versus medically-based which is so often just not true.
And sadly doctors unless a marker is just kind of really off the charts they tend to discount them and maybe not look for patterns and maybe they don’t mention it to the patient or say we need to watch this come back let’s test this let’s see how this progresses to give you a heads up that you need to definitely keep after your quest they kind of make a silent mental or maybe even a little silent note in your chart but they don’t stress it with the patient.
So he won’t stay long for quite a while with his autism diagnosis yet and anyways it just didn’t seem to be a full match kind of a match so it was questioned and discounted and yeah we’re not really sure.
But as time evolved so much of the drivers seem to be medically biologically grounded and founded versus just a different neurological sub type of human.
And attempting to figure out all of the medical issues that were being categorized as psychological issues in advertently mistakenly due to the lack of knowledge we eventually as things progress two more serious levels on all aspects on all fronts landed into the before unknown world of Ehlers-Danlos syndrome.
It truly took a young man who had a severe form of Ehlers-Danlos to engage in a casual conversation and observation of me and my children and he connected all the dots he knew all the right questions that a medical honor doctor and a psychological doctor didn’t seem to have the foresight and knowledge to ask to discern to delve into deeply but because he lived with it on a severe level and he knew what he was looking at he was able to ask those questions so it’s pertinent questions and drill down into the nuances and he was forward enough to say have you ever heard of this condition and have you considered it you might want to do a little research on your own.
And that started a whole new journey of discovery and realizing that the genetics in our family had led to an increase in incidents of diagnosis of autism and today the research shows that so many with hypermobile Ehlers-Danlos syndrome are diagnosed autistic and just a whole host of other diagnosis before they ever get to the genetic mutation that is driving the whole thing which is Ehlers-Danlos Nassau activation syndrome pastoral orthostatic tachycardia and leading to these autoimmune presentations… And potentially the neurology that develops overtime living with a pain condition that impacts the signaling in the body due to hyper mobile loose joints and proprioception issues that would form the neurology of someone diagnosed with autism
Thank you 🙏 you were very good at explaining everything about your Autoimmune issue’s ! wish you well , God Bless You 😄
You sound like me. Thanks for sharing
Thank you for sharing! I get these horrible rashes also. But on my face and entire torso. Horrible, itchy, scarring, peeling....And they take forever to heal. Then there's my shoulders and arms. I am afraid I could lose use of my arms. The pain in the shoulders and now elbow has me scared to move. Trying to sleep is torture. At least I have a name for it all😏
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I have the rashes on my elbows and then the rash will go away. But leave my elbows dark, smh. And I'm 56 yrs of age.
@@littleone5201 Yes, the scarring is vicious. I still have scars on my face from 2 years ago😒
@@LadyLibra-kp8ox You can scrape your leg and boom. It turns into a sore. Your skin is your enemy. But I bought this make up where you can't see any scares and it does come off. I have not used it yet. Its for a special occasion, with my husband.
I walked out of the doctors yesterday in tears because the doctor said " I believe you have symptoms but I don't believe there's anything wrong with you. Some things just can't be explained." So.... you don't believe I have symptoms then? Chronic diarea for over a year, break outs in rashes, numbness in my left leg that travelled up to my hip when I got really sick, pain and blurred vision when moving my right eye, severe shoulder/back/neck and hip pain. Apparently it's all in my head. Burning when I walk. If I don't have any autoimmune disease, like they believe they could atleast see if I've pinched a nerve or something to explain the pain, numbness and tingling in my right shoulder and left leg, but no. I've given up all my unhealthy habits, I've quit smoking, I'm taking vitamins and eating healthy but nothing helps. I have good days and bad days, when the bad days are bad, they are BAD. I feel like I'm losing my mind. Maybe it is all in my head? I dont even know anymore. The NHS in the UK is actually so not even worth it. They're so snowed under they don't help people unless they are literally on deaths door. So I guess I'll just have to wait until something really bad happens or just live in pain for the rest of my life with no help. I am only 31 and have 2 young children, I shouldn't feel this way, it's not normal.
I’m sorry you are going through this through this. I went 20 years without a diagnosis and always got blown off by drs. Did they test your ANA? None of my drs did and I found an online lab where I could order my own bloodwork. The ANA was positive for me. This is how I finally got referred to a rheumatologist. I also want to mention to be careful about the vitamins. Research what vitamins are bad for autoimmune disease. Anything that boosts the immune system can wreck havoc on someone with autoimmune disease. Trust your gut and keep trying. I believe you 🤍
@thewanderingstarseed they have done an ANA and it all came back clear, since writing this I had more symptoms and illness that finally got them to refer me to a neurologist. I have started to go to the gym and my joints are really suffering from it but I'm persevering so they can rake me seriously. When I work out I get blurred vision and I'm still breaking out in rashes and have a lot of pain and numbness. Thanks so much for believing me, I feel like no one else (other than my partner who sees everything I'm going through) does. My referral letter the sent the neurologist was so bad. I'm pretty sure they won't take me seriously with a referral like that! But I will have to wait and see, it's not untill November so finger's crossed I don't get sick again in the mean-time. Thank you for your support and advice ❤
I have everything the same. Like I listem yself on that your video. I expecting my exams form rezmatollogist, and than we will know what is. For now its lupus, but, I have just like you everything else. But my UV (ultra violent) alergic is for lupus, RF is negative, but I have osteoartritis, lordozis, spondilozis. Its now almost 10 years of searching what is to me, but few mounths with my reumatologist. And now she is on the way to now what is going on. And I expecting my other exames (ANA, ENA, dsDNA) and than we will now.. but I cant enymore, I'm so exausted.. arms, legs, shoulders, back, tired, etc. But I live for the day of threatment for disese.
I’m still struggling with possibly MCTD undiagnosed by a rheumatologist but two pcps agreed it may be that that I’m having issues with. the worst is the fatigue that sometimes keeps me in bed! But I also have balance issues. I have tried different things to feel better and the only time I do feel “good” is after I wake up from a good nights sleep. Other than that I feel “sick” constantly.
I don’t like medications so I’m worried that I have to take anything but I’m hoping I can find a natural alternative.
I was just diagnosed 5 days ago and waiting to get in to see a rheumatologist, I’ve so many questions!
Hoping that you found answers and a treatment that works!
I found a doctor and I got refered to the rheumatology place here in the city I live in but it was a 5 month wait and they sent me a message saying they've been trying to contact me about rescheduling the appointment that was supposed to be Feb 14th to get tests done bc like you I got the same results of ra being high so I haven't called them yet and it's been almost a month bc that's how mad I am about it and I don't think my doctor's office knows about it bc they haven't tried to call me and they're supposed to help with some of the symptoms until I got into the rheumatology place.... Anyway I'm calling them tomorrow so yeah wish me luck and thank you for your story ❤
I know exactly how the hip pain and arm weakness feels. Still in dx phase.
Thanks for sharing
Yes just told I have MCTD and lupus was diagnosed first
Tytyty!!! My doctor just keeps telling me, "but your ana is neg. Nothing is wrong". They are only human, but I do wish they would be a little more open to possibilities. Thanks again.
Yes! Find a new doctor!!! Keep pushing until you get answers and treatment.
@Emily Luna will look into it. Thanks so much!
I am also suffering from mctd have you fully recovered what are measure i should take to stop it
I was diagnosed with MCTD in 2018. I had just started a new job and separating from my husband. My first symptom was mass on my neck it was huge the hospital thought it was cancer the day I was going into surgery it started to disappear. Than I had a fever bladder infection and kidney infection. I typed alot at work. My hands started locking up I had bad shortness of breath extreme joint pain headaches rashes all over my body and face sores on my scalp I lost all my hair eye lashes eye brows. I started missing so much work because of frequent hospital visits. By the end of 2018 I had to be admitted for 10 days they took arm pit samples of my lymph nodes after positive results they said lupus but continued testing xrays scans MRI soon I was diagnosed with MCTD. I got better for a while after I started taking the meds. But more symptoms came blurred vision gastroparies symptoms and siezures. Living with this is so hard sometimes I'm like why me? I still haven't got my flares under control and now its attacking my lungs and liver
Michelle, that sounds horrible and so frustrating! I'm early in my journey, but I've managed to decrease many symptoms with an autoimmune diet. It's high in nutrients, low in inflammatory ingredients and maybe it could help some of your symptoms. If you aren't familiar with it, this is a great place to start: www.thepaleomom.com/start-here/the-autoimmune-protocol/
Health and healing to you!
I have a question, I am going thru the same thing almost to the T but have weird cold fingers and nuckles once in a while that turn white ? I was wondering what is an end? my doctor explained that I have a positive ANA but they never brought up anything about RP is that the rheumatoid factor when they discussed that with me they never say whether it’s high or low they just say that it was negative but yet my ANA is positive and I have, a lot of lung issues and joint pain and Stephanie, severe swelling and limbs. This is the most confusing disease ever. I get bacterial pneumonia a lot as well ??
My mom is recently diagnosed with MCTD can you please say anything
my mom pain is not goin away even after having so mny painkillers as prescribed by dr
Thank you for your video. Were your migraines related to this disease?
How long can you live after being diagnosed
My doctor gave me a bunch of bs tests I kept begging and she finally did an ana. It was positive speckled pattern 1:1280. I have to wait 4 months to see a rheumatologist. I had no idea she could have possibly diagnosed me or given me more tests in the meantime. She didn't even want to explain my results. She said your ana was positive so I'm referring. I had to ask her what the results meant. I have an appt next month with an internal medicine doctor,hoping I will receive better care
Primary Care docs can't diagnose autoimmune disease. Sometime Rheumatologists can't even diagnose Lol The ANA can mean many things or even nothing. Its a lot of extensive anti body panels and other testing needed that PCPs do not have knowledge of and some of them can't even order tests beyond the ANA since they aren't a Rhuem. With that being said healthcare still sucks. They don't care, it's sad how we have to go behind them and do our own due diligence and/or they push you off on another doc.
What was your rnp?
Thank you for sharing your story. Do you wake up with sore, tight hands?
Absolutely. Especially now that I am 2 months postpartum and having a flare.
I’ve had this issue for 3 years before being diagnosed with Undifferentiated Connective Tissue Disease. I take Hydroxychloroquine and it has helped me immensely
Hey Lacey thank you so much for sharing and making this video! I am currently getting diagnosed with MCTD and its really hard. I really understood you video and took in your recommendations. How are you feeling now? How is the medication treating you? Did you do any changes in diet? Thanks!
hey Ana T,how are you ? how you doing ? 1 day back got diagnosed with MCTD ☹️, how is the doctor is treating you ? what medication are prescribed you? @Ana T .God bless you
Am finally a mother today , because of fibroids my tubes was block for 6years I and my husband was having issue because of my situation no child when I was Searching online on RUclips about fibroids I saw a testimony about dr Omo so I write him and place order for his herbal today I have 2weeks old baby now he can help you too Herb's work like magic. Both on infections
ruclips.net/channel/UCZJJR-LpB1SVD09hQkt1-GA
His channel ruclips.net/channel/UCZJJR-LpB1SVD09hQkt1-GA
Hi, really appreciate you shared your story. But aren’t you concerning about the side effects of those medications?
I sometimes wonder if I will be on them for the rest of my life but very grateful that they have so dramatically improved my quality of life and enabled me to be present and well for my family.
Did you get muscle twitching
@Tyler Tylier I have MCTD and regularly have muscle twitching, pain and spasms along with joint and nerve pain, and occasional mild skin rashes that pop up out of no where.
i WAS ALSO TOLD MY THE RHEUM THE SAME THING. i MY RNP WAS HIGH AS WELL .
Yes! Keep pushing for answers and advocating for yourself.
It's sad there are no pain meds allowed for mctd and we are treated liike drug seekers. My life is an agony with ic and headaches. They want to prescribe expensive biologicals that I can't afford. I'm allergic to steroids and was given them by mistake at pain management.l suffer from severe osteoporosis and PTS andI don't trust anyone now.
Have you looked into infectious causes or toxins? I’m suffering terribly now with a severe and undiagnosed CTD involving neuro and atrophy. I also have nothing on MRI.
I tested positive for a few different antibodies but nothing that matched the criteria (NMO, anti-parietal cell, anti cardio lipid). However…I tested positive for Lyme Disease and several other co-infections. I also have had some exposures in the military, including black mold (mycotoxins).
I’ve probably seen about 100 doctors myself and am in the hospital now. Don’t feel too hopeful…but wanted to share my situation.
A year and a half ago, I was super fit and active…painfully losing ground (nightmare) ever since. I can’t even sit up anymore due to connective tissue failure.