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I have been begging doctors for answers for almost 20 years
I have been feeling worse and worse year after year. They would act like it was depression but had every reproductive organ taken out (they found a softball size cyst behind my uterus non-cancerous) have suffered for 20 years with chronic pain, had both hips replaced, 6 si-bone fusions, 4 level lumbar surgery with pins and rods, kept getting sicker and sicker, then lung issues, they tested me for lupus at the beginning 2 times negative, ana came back positive and speckled 3 years ago, tested me again said the found nothing but said I had some inflammation. Then I was sent to a infectious disease doctor, who asked if might be dermatomyositis, send me to dermatologist in which was finally a caring doctor who knew I was not ok and after the punch and scrape biopsies, sent me for specialized bloodwork said it was definitely Autoimmune before all the bloodwork came back, it took almost 3 more weeks and let me know it was Mixed Connective Tissue Disease and put me on Hydroxychloroquine. The Rheumatologist that I went to here is suppose to be the best but she is the doctor who acted like It was in my head, a lot of them did. They even made me doubt myself but had to quit my beloved career because of feeling so bad and so much pain
I am being made to go back to her to her but I feel she doesn't want me as a patient. My question is what needs to be done next? I'm at a loss. Thank you and I have Blue Cross Blue Shield. There is more to this. Is there a phone nu.ber to somebody I can speak to about MCTD?
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You could ask to see a different doctor in the area that they are referring you to. And I do hope there is someone equally as talented as the one you don’t wanna see. I understand what you are going through and I had something similar many years. 30 years later, I was looking back at things and I realized the things that was bothering me was things they didn’t know how to treat or didn’t know what it was. The medical profession is learning every day and are understanding things better every day and have come to understand what some other patients were talking about and are much better at diagnosing certain types of diseases or injuries..
Do what you think is best for yourself. But remember, they say medicine is in its infancy So they are learning
I wish you the best
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1 Reaction@minnesota10 So true, Minnesota. It is maddening, Stylist. I think that many of us older folks suffer from something the doctors don’t understand yet and have not yet identified. And sometimes our symptoms seem to present in a vicious cycle.
One doctor I have had told me outright that I have something but he can’t identify it yet (when I had active Lyme). Luckily another doctor diagnosed it. A recent doctor told me that he thought whatever had caused a whole body rash was gone but once your body gets inflamed, it is hard, and takes a long time, to turn off the inflammation. The last insult is that, several times, the medicines that were prescribed for one condition sparked another condition that I otherwise would probably not have.
All I can recommend is to eat good food, stay hydrated, exercise and get enough sleep. That is all any of us can do. Research any meds that are prescribed for side effects.
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1 ReactionI am so sorry….just because they are called “best of the best” doesn’t actually mean that. What I have found that’s a fancy phrase for my ego is the biggest and get out of my way. I would look for a new rheumatologist and don’t be afraid to find one who isn’t the “best”. You have the diagnosis now so all you need is management.
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2 Reactions@brhb2011
The best doctors are the ones who take the time to listen to you, and are not afraid to refer you to someone else when they don't know the answer!
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5 ReactionsDoes MCTD cause severe symptoms? And Is Hydroxychloroquine I take 200 mg 2 times a day the only medication they will offer, what do they do after I am diagnosed because I could not get in with that Rheumatologist until November? What should I expect her to do? I have read about it but I am the person that reads what real people with the disease are going through to understand it and is it really rare? Thank you all for taking time to write to me.
@kjoed53 There isn't many of those any more. I've had 4 maybe 5 since I moved down South and they always leave for a better opportunity or retire and I don't blame them.
@imstylist72
I must be an outlier then because all 4 of the doctors I see on a regular basis are in that category. Two are nearing retirement though.
Autoimmune diseases are tough. The diagnostic tests are not all great, the treatment options may be limited and the diseases can flare up
And then go into remission, making it very hard to diagnose. I am so sorry to hear the run around you have been through. Unfortunately, it is all too common. If you are comfortable doing it, why don’t you talk to the rheumatologist to explain that while you are back, your last meeting made you feel like she was gas lighting you. Not easy to do, but she may offer an explanation that will be satisfying and allow you to trust her again. It might be helpful for her too. If you are not comfortable, maybe you n ed to see a different rheumatologist?