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Re: SFN Questions.
Aug 1, 2010
[QUOTE=Oliejune;4298414]Hello Stargrave, as I mentioned in an earlier post, my sfn started with Wegeners, which is a very rare disease. Although I am in remission, the sfn persists, and has gotten worse.I have a buzzing in both of my feet all of the time.The numbness in my index finger is constant. I have pins and needles in my arms, legs, groin, top of head , on and off. I have severe pain upon slightly pressing the skin on most parts of my body all of the time. I think it manifests itself in a variety of ways , and baffles us and our physicians.In my case, the docs aren't sure yet how much of my symptoms are caused by my back issues, and how much of it is caused by sfn. I hope you find some answers, and some relief from your symptoms. It's a difficult path,I know. Good luck[/QUOTE]

You can't be more accurate in saying that very few MD, and much less us patients, can really get the whole picture of what's going on with any kind of neuropathy.

And as it's illustrated with your case, sometimes when there's a second condition that could mimic all the symptoms(back issues), it's even more complicated to diangose/treat.

For instance if B-12 deficit is your problem no back surgery(for example) is going to help, and viceversa.

It's imperative to try to find out both what is it that you have, and then, the underlying cause.

Just as an example, about the autoimmune variety, CDIP and SDIP(hope I'm right with the abbreviation here), are pretty much identical but one seems to responds better to some specific treatment than the other.

And on to the symptoms:

Pure SFN should not have objective weakness included(Clean EMG), just the sensory issues, well I have both.

Pure Motor(my supposedly official dx), should not have sensory issues, like pain, tingling, burning, etc... Well, I have both.

Then talking about it's presentation:

Unless you can see, or detect(by studies) a really noticeable increase in weakness, pain, loss of function, etc. It's really hard, almost impossible to tell the difference between leftovers of an acute episode that damaged your nerves(like GBS), and a real progression of the condition.

And even in the best case scenario, where nerves can recover, it takes a while, and until it happens you're getting the whole array of symptoms, at least for weeks.

Today I got my first(ever) Contrast MRI, I was dubious and nervous about the contrast, but, I agreed, just to have the whole, best picture possible, in order to find the underlying cause of my condition.

I know that the MRI won't necessarily show this, but it will eliminate or confirm something else like MS(knock on wood).

Even if that was the case(hope not), it will always be better to know what is the problem, MS or any other, and treat it properly, that having the condition and not doing anything about it, because you just simply don't know that you got.

Coupled with a new NCV, a complete blood work, all the way from autoimmune stuff to vitamin deficits, there will only be a few ultra-specialized test, like the nerve/skin biopsy, left to complete the known to men test used to diagnose this thing.

Hope I find the answers soon.

I'll keep posting the results/revelations.

Best luck to all.





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