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#1 | |||
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I'm having some possible AHA moments this morning but want to make sure I am not over reacting.
I am not sure if some of my symptoms are autonomic so I am asking for your input if I should push for a sweat test and if so which one? For many years before I had any burning or what I now know as SFN sensations I had boasted that I hardly sweat. I could come out of a spinning class surrounded by people who were soaked in their own perspiration and I would have a small damp spot on my back. It's not that I was incapable of sweating it's just that the circumstances would need to be extreme. Lately my blood pressure has been getting higher. From 90/60 or 100/70 for years to recently 129/78. The lowest it seems to go is 117/70 or 80. To all my new doctors this is not a concern, but to me it needs to be compared to what it was. I have not gotten a dx for SFN not even idiopathic, not for lack of trying. Do I pursue this or am I being a over reactive? ![]() |
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#2 | ||
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You're having burning in your extremities? Pretty sure a good neuro will do a skin biopsy or sweat test if you have that symptom. Are you saying your neuro wont do it?
__________________
Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced) • R-Lipoic Acid: 100mg - 300mg Daily • Acetyl-L Carnitine: 1500mg Daily • Vitamin B12: 1000 mcg Daily • Magnesium 500mg Daily • Grape Seed Extract 200mg Daily • Benfotiamine 300mg daily |
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#3 | |||
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Based on my symptoms I am pretty certain I have sensory SFN. What I wondering about now is if I also have autonomic SFN. |
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#4 | ||
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I have found the supplement l-citrulline helps with the burning in the extremities.
__________________
Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced) • R-Lipoic Acid: 100mg - 300mg Daily • Acetyl-L Carnitine: 1500mg Daily • Vitamin B12: 1000 mcg Daily • Magnesium 500mg Daily • Grape Seed Extract 200mg Daily • Benfotiamine 300mg daily |
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"Thanks for this!" says: | pinkynose (10-08-2015) |
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#5 | ||
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Sometimes I wish I didn't know that there was actual damage because it just sounds terrible. |
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#6 | ||
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This is a big concern of mine. I have a fairly physical job, and for a time, I was having a great deal of difficulty doing all the required walking, climbing, etc. My company has a great long term disability policy - but how could I make a claim without a diagnosis?? Fortunately, I'm currently doing somewhat better - but we all know that the beast could rear its ugly head again at any time. I don't like thinking about these things - but with bills to pay and two kids in college............. ![]() |
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"Thanks for this!" says: | Healthgirl (10-08-2015), Patrick Winter (10-08-2015) |
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#8 | |||
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Truth be told, the main reason I worry about autonomic is I have a tricuspid heart valve leak which is significant enough to warrant annual monitoring. My yearly appointment is the end of January. My SFN symptoms didn't show up until the end of February last year so my cardiologist is not aware of this. I had my records sent to her by the neurologist recently but you know how that goes. If it weren't for that i don't know that I'd push for the sweat test. I continue to try to push for a cause even though my ex-neurologist rattled off depressing statistics about the odds against help. In the meantime I do my own "not ready for prime time science experiments" to be able to figure out triggers. |
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#9 | ||
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Isn't that wonderful of them? "It's not curable but we can give you drugs that'll allow you a "quality of life". You'll be dizzy, have blurred vision, forget your own name, unable to drive and unable to get out of bed but otherwise you'll do just fine." Didn't he just say "quality of life"?
__________________
Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced) • R-Lipoic Acid: 100mg - 300mg Daily • Acetyl-L Carnitine: 1500mg Daily • Vitamin B12: 1000 mcg Daily • Magnesium 500mg Daily • Grape Seed Extract 200mg Daily • Benfotiamine 300mg daily |
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