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Originally Posted by MAT52
Coming at this from a different angle I would have been relieved if I'd been told my skin biopsy results showed up positively. Then I might have been able to access proper treatment again for an immune mediated SFN. Presently the normal skin biopsy results taken by my GP on my old island home are holding up the prospect of me getting onto further treatments to prevent progression.
They do say that SFN isn't a disease in its own right - the symptoms can be triggered by many very different causes - from chemo to diabetes to immune mediated neuropthies and central nervous system disorders such as MS and even certain cancers such as Multiple Myeloma. Speaking for myself I would be a far more positive person again if I knew that a) it wasn't thought privately by doctors to be a symptom of a mental health disorder or a wishywashy diagnosis such as fibromyalgia or b) part of a more serious disease that all my doctors are missing because they are overly preoccupied by specific blood related diagnostic criteria.
Also I know that each of the two the skin biopsy samples were only taken from my calves and were sent from my island by my GP to somewhere on the mainland and that it was an unusual procedure for my area. Also I was on antibiotics for pneumonia at the time so I wonder now how reliable these samples actually were.
So I'm in the opposite position to you and think that if I at least knew what was causing my widespread SFN and knew what the prognosis was I'd be much better at moving on with my life than I currently am. I have got used to being in pain after 50 years of various conditions, but I can't get used to the uncertainty or settle for the idea of having something so overwhelming being described as idiopathic.
Also I do have high BP now as well and I think this is just as scary to me because both my parents died prematurely of atherosclerosis - which I am starting to suffer from too - and the medicine I am on isn't helping lower it at all - so another is being added in too. SFN is awful and mine is slowly progressing but I'm just as scared of having a stroke. I can function with my SFN but just not as well as I'd like - the fatigue and disequilibrium/ disorientation aren't great and I would love answers for what is causing this.
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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.
