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Originally Posted by Healthgirl
I am in a similar situation and have begun to accept that medication might improve my quality of life. I have high full body SFPN with dysautonomia. Due to my high speckled ANA, they suspect autoimmune process, but can't pin it down. One neurologist is confident that it is sjogrens and offered plaquenil. I haven't taken it, and still I leave it an open option, but I feel since I really have no concrete cause found, I keep waiting for new opinions. In the mean time I am trying out mestinon and midodrine which are commonly prescribed to manage some symptoms of dysautonomia from any cause.
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I'm sorry to hear you are in a similar position. In some ways for me it is easier because the autoimmune disease came first.
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Originally Posted by en bloc
First thing I would suggest is to have your IgG subclasses checked. 25% of people with autoimmune disease are also immune deficient. Since you get an infection every time you increase the immune suppression you might just have a weak immune system to begin with. Many doctors check the IgG level but they don't check the subclasses. MANY people (myself included) have a normal total IgG, but are deficient in 1, 2 or more of the 4 subclasses. This would explain why you have a hard time with your current treatment regimen.
You may find it helpful to treat the underlining cause...but sadly, it's not always effective for autonomic dysfunction. When autoimmune disease attacks the autonomic ganglia, it is often permanent. Therefore, symptomatic treatment is used. There are good treatments for gastroparesis, and orthostatic hypotension, along with POTS. The neurogenic bladder is a bit harder to treat, but hopefully they have some new treatments out there now.
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I don't know how I would go about having IgG tested. Would it be an immunologist that I would need to see?
I do have this suspicious feeling that my symptoms are permanent, hence my nastiness in increasing the immunosuppressive drugs.
I was trailed on midodrine which was helpful but the NHS (well only in my area!) won't fund this due to cost and my cardiologist has concerns about me paying for it privately and not being monitored properly. That said, I am seeing cardio again to discuss.
I hear that there are good gastoparesis treatments but my experience has not been good. I've tried many treatments without success. I am awaiting another opinion but I am looking at a wait for around a year to be seen.
