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Old 02-08-2015, 07:18 PM
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janieg janieg is offline
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Join Date: Jan 2014
Location: Maryland
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10 yr Member
janieg janieg is offline
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janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
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The assessment of "no progression" is my own based on symptoms. If anything, I've improved from a year ago. Even though I ebb and flow, I no longer have the horrible searing nerve pain I did about a year ago. I also think the severity of my other symptoms (burning, tingling, odd sensations) have lessened. I'm also no longer kept up all night by symptoms, although I do still have some off nights. I know to some extent I've learned to be comfortable in my discomfort, but I do think I've actually improved.

I started taking R-Lipoic Acid last summer, and I have to believe that at least took some of the edge off. I'm not taking any meds to help with the discomfort right now, although I was taking gabapentin for awhile. I'm not sure it helped.

My neurologist opted not to do a biopsy as I'd taken a jillion other tests up to the point of the SFN diagnosis. He said he could do the biopsy, but all it would do is confirm the diagnosis which he was sure of (and so am I).

<edit>

I should add something which may or may not be of significance to all this.

I did one other thing that could be contributing to improvement: I drastically changed my diet back in September by going on a low carb diet. Despite having normal diabetes screening values, I've learned I do indeed have glucose issues that I can see by self-monitoring. Since supposedly 50% of all SFN sufferers are diabetic or pre-diabetic, I decided to treat myself like a diabetic, and will continue to do so. If high glucose are responsible or partly responsible for my SFN, my dietary changes may be helping.


Quote:
Originally Posted by MAT52 View Post
I believe it's a global scoring system Janieg but it is primarily used by the NHS because of the great expense of biologic drugs.

I'm interested to know how your idiopathic SFN is judged to be non progressive to date? I feel mine is progressing steadily because the tingling, burning, damp sensation has spread to above my knees and elbows from just affecting ankles and wrists over the past 18 months or so. But I'm not sure how this could be evidenced clinically and it didn't show up in my nerve conduction tests? Do you need regular skin biopsies to assess whether or not it is actually progressing?

Last edited by janieg; 02-08-2015 at 07:57 PM.
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