Connect
← Return to Undifferentiated Connective Tissue Disease
Discussion
Undifferentiated Connective Tissue Disease
Autoimmune Diseases | Last Active: Aug 1 7:21pm | Replies (79)Comment receiving replies
Hello all. I was diagnosed with UCTD but the meds were unbearable. I would take it and be vomiting within an hour. Tried injections and the same thing. I am allergic to a lot of medications age my body is highly reactive. Started a new Rheumy and he now said no not UTCD but wants me to at my primary for fibromyalgia, cold urticaria, joint pain and chronic fatigue, to my eye doctor and dentist for dry mouth and eyes, my neurologist for chronic headaches and essential tremors. It’s frustrating. My test 1:1280 every time. One test showed positive for RA but then the next didn’t. They didn’t test further after hitting the 1 positive. I know something isn’t right. The fatigue is horrible, the neuropathy comes and goes but can be awful. Chronic headaches last for months but auric to NSAIDs. I have ptosis of my eye. My kidney tests are abnormal. My mother died from ALS and I’m confident my father had Parkinson’s. I think he believes I’m looking for meds and I’m not. I’m looking for answers so I can research other ways to combat it all. I tried Mediterranean eating but ended up with stomach and bathroom issues. What do others do, besides medication?
Replies to "Hello all. I was diagnosed with UCTD but the meds were unbearable. I would take it..."
@maggs413 I have a diagnosis of UCTD and Sjogren's. I have had neurological symptoms for a long time, my father died from ALS and my husband has Parkinson's so I am pretty aware of the symptoms connected to those. I am on a fast learning curve regarding Sjogren's - it's highly common to have neurological impacts that can be systemic. Currently I have developed gastroparesis and just had a small nerve fiber biopsy that showed damage/loss of small nerve fibers in my leg, consistent with neuropathy caused by Sjogren's. The symptoms are very similar - including loss of muscle and drop foot. For years I have had various health issues which now are being seen through the lens of autoimmune. Your positive ANA and symptoms definitely warrant better investigation and oversight- a competent and well informed rheumatologist would not reach that conclusion, mine didn't and it's made all the difference. By the way, Sjogren's is often seronegative, meaning you might only test positive for ANA, and sometimes even that is negative. Keep reading up on this and hopefully you can find a smarter doctor💗
Connect
@maggs413 I think you might want to find a new doctor who specializes in autoimmune diseases. I’m going to give you the name of an AD organization that keeps lists of doctors and what is going on in the AD world. You should be able get help from them.
https://rarediseases.org/
You may have to drive 1-2 hours but it’s worth it. I still drive, at least 1 hr in rush-hour traffic, to have appointments with my doctor.
I sure hope you’ll get the help you need! Write back to me and let me know what happens.