Monday, November 26, 2018

Another Diagnosis?



Yeah believe it or not...

Undifferentiated Connective Tissue Disease

Yes, I know things are to the point where it would be easier to list what is not wrong. What is scary is my body started attacking it's own skin beyond the psorasis. Sores on my forehead and hair line have been bothering me for a couple years. I blamed it on my CPAP mask, but I switched to a new one three months ago that doesn't even touch my forehead and the forehead sores won't go away. It's a giant red splotch and yes people ask about it. Wearing makeup would just make it itch and weep more.

There's other skin problems on my arms different from the psorasis and dark velvet patches on my body. I learned I got diagnosed with Dermatomyositis some time ago. That one, I probably saw on my medical records and thought it was like dermatitis and blew it off. The house call doctors also had added chronic fatigue.

It seems autoimmune related too. I think there is some muscle weakness but not sure given the other health problems. I wondered for years why I was getting giant dusky patches on my skin where it looked like the first layer of skin had been removed, and remember saying to one doctor: "My arm looks like it is getting cancer".

It seems I am right about the vasculitis, I wrote about that YEARS ago here. I have to tell the rheum, I had a skin condition for years no doctor could diagnose and I went online to see what matched it, myself. Bloody pin pricks would bust out all over my entire body and once even put me in the hospital 25 years ago. They blamed the skin sores on my weight and diagnosed me with "statis ulcers". This would keep going on for years in smaller batches. I even had a small patch break out the other day though overall it lessened. I saw dermatologists constantly in Chicago with no help or answers. Sometimes I wonder how long have I faced these things? UCTD or Undifferentiated Connective Tissue Disease used to be called "latent lupus".

The ANA and other tests were positive.

At least now the doctors know I am not faking it or malingering when complaining about fatigue and pain. I did make the decision NOT to go on Plaquenil which is kind of medically controversial, as it can cause retinal damage. See the comments at the link. I have a relative who took this drug and had vision problems. I wrote the doctor an email saying, "I am already almost deaf, this is too much." Things were scary, I may have to change this decision if things worsen. Yes, I am worried about dealing with the skin, pain and fatigue, but my terror of blindness outdistances this all. Being nearly deaf, I depend on my vision to live and function. Yes I know the diabetes is a danger to it too.

With severe Lipedema, there can be massive autoimmune involvement. Many women with higher stage Lipedema are diagnosed with a vast array of autoimmune disorders, oddly scary ones involving the skin seem to pop up a lot. Elhers Danlos Syndrome is one major disorder that accompanies Lipedema. I am trying to research if there is overlap with Dercums with the UCTD. Some people online wrote they had been diagnosed with UCTD first.

Pain and Falling Apart Bodies Suck


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