Quote:
Originally Posted by Healthgirl
I don't think we are in opposing positions here.
My SFN is suspected to be autoimmune due to a very high ANA, that went up in correlation with the severity of my symptoms. Even though this is suspected, they cannot or will not proceed with any treatment, so this is the main reason why to me, it was more upsetting to know that there is actual damage. I also have absolutely no prognosis.
I definitely understand your point about this disease being labeled as fibromyalgia or having no name at all. I was fortunate to have had one of the early doctors I dealt with who was very serious and was sure there was something terribly wrong. He prompted me to go right away to the city. It took 4 months after landing in the emergency room a few times to have someone decide to do a biopsy.
I hear the stories of people who have gone years with being told this misery is all in their heads. I was told I had lyme, fibro, dystonia, raynauds., sjogrens... I don't even remember what else. So, the skin biopsy settled that, but still leaves me nowhere in terms of treatment or having my life back.
For what it's worth, my biopsy results for the ankle was borderline and the thigh was significant. My symptoms in my foot and calves are ten times worse than my thighs (thighs are bad too, and that is where I get the vascular rash) - but if you'd asked me, I would have thought the ankle damage would have been worse). They didn't take any samples from my upper body where I have muscle spasms, tremor, lack of coordination, etc. Also, one emg was abnormal and one was normal, so what use were those?
When was your biopsy? Are you due for a retake? In your situation, if you have doctors who would do IVIG, then it would make sense. Personally, I don't want to have it redone. I can't bear hearing if it is worse because they will not offer me ANY treatment whatsoever.
I am going to a toxicologist and a functional md next week. I'll update when I hear what they have to say and hopefully will have some new avenues to share.  |
Obviously I can't contribute to the best lab/ skin biopsy side of things because I'm in the UK/ Scotland. But if I had a high positive ANA here this would defintely lead to a diagnosis, probably of Lupus but perhaps of Undifferentiated Connective Tissue Disease (UCTD) - both of which would lead to treatment here fairly rapidly on the NHS (ie free) So that is shocking that you can get these kind of results with no treatment plan built in. This is the only reason I would want my results (especially ANA) to be positive. Is there any way of appealing this decision? I just don't understand how you can be left untreated while suffering and deteriorating.
I can't access any treatment now because my RA has gone from positive and symptomatic to negative and non symptomatic - so I'm told the SFN must be non-rheumatic because of wholly negative autoantibodies. No one has ever mentioned Fibro to me or tried to suggest it's a product of my mind but I have so many friend who have had this lazy type of diagnosis that I'm paranoid!
Yet I also have several friends now in England who have less showing up in their blood work and CSF than me, but who have been diagnosed with Lupus, Sjogrens or UCTD. But in my case I don't feel I'm ready for immunesupressant treatment again having tried and had severe reactions to four so far. I am preparing to try and find a good functional doctor here too but it's hard to know whom to trust. My rheumatologist is still keeping me on his list in case the joints flare again or a vasculitic rash shows up. He would defintely be treating you if you were his patient! Good luck xx