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So what about your WBC & RBC did Hydroxychloroquine affect them? I noticed that my blood count went down.

I always wondered y ppl rushed wanting to know the gender 😅 I’m not paying nor rushing to know gender as long as my baby is healthy my heart is peaceful

How long can you live after being diagnosed

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 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. 🙄

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.

What about the moon face?

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 your video. Were your migraines related to this disease?

Have you been taking hydroxychloroquin during pregnancy?

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

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 can not take steroids, it shoots my blood sugar sky rockets

Thank you for sharing and I hope you are doing better!

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 ??

I know this video is 3 years old now but I'm 1w weeks and I'm feeling period like cramps in my pelvic area and nausea especially when I get up and move around, I just go back and lay down after 2 minutes lol

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 ❤

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 ❤

You did a good job. This video was on point.❤

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!

Same exact symptoms at 12&13 weeks except nausea got waay better for me , mild pains in stomach area and some in my private area thanks for this video

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 I just got diagnosed and I feel horrible 😢.

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.

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I have been on plaquenil for 30 years, no problem, I will be joking you all on u tube, to share my 30 year journey 💜

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.

May i know your rnp titer

❤

Thanks for sharing

I have been on Plaquenil now for 7 years, and for the most part, I have tolerated it well. Having some systematic issues now, including mixed connective tissue readings, reynard and recently muscle pains. On meds Cadesartan and HCTZ for hypertension. Also on Prednisone. Not feeling myself. Need a review I think. Meds may not be working as before or having some long term side effects from drugs. Getting tired of the off feeling.

Awesome

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

How are you doing now?

Yes just told I have MCTD and lupus was diagnosed first

When did it start to reduce your hair loss?

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 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!🙏🏾

Thank you girl, I was shocked to hear you name off the same issues I have been going thru, Good luck to you

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.

You sound like me. Thanks for sharing

Sis I have lupus myself, I just turned 23 and I’ve had both hips replaced, a knee and ankle surgery due to prednisone. I got diagnosed at 18 and listening to doctors kinds f***d me over. All I’m saying is just be careful and do your own research on the dangers of each medication. I developed AVN and my bones were dying under me (I was only on the medication for 4-5 months and it did long term damage)

What was your rnp?

Thank you 🙏 you were very good at explaining everything about your Autoimmune issue’s ! wish you well , God Bless You 😄

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.

Did you get muscle twitching

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.

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