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Re: SFN Questions.
Aug 4, 2010
First of all thanks for your reply, I often feel like I'm alone in this nightmare and don't have anyone to talk to.

Unfortunately the "trigeminal neuralgia" has returned even though I'm taking twice the gabapentin as before. Thankfully the attacks aren't as severe, it's still very painful but not so bad that it makes me scream like before. My dr wants me to go back to Mayo for a follow up appointment because he doesn't feel qualified to make any determinations about it. I have had a sweat test that showed autonomic nerve dysfunction, that was how I was dx'd. I recently had a very high blood presure test where normally I'm very low, I told my dr that I thought it could be from the SFN, should I be going to a cardiologist? Before I was diagnosed I had so many dr's treat me like a nutcase that I am reluctant to see another one unless it's important.
Also, the summer weather seems to have a big impact on my symptoms. I'm so incredibly weak that just brushing my hair or folding laundry is difficult because I'm having problems lifting my arms and grasping things with my hands. The pain that I normally have is twice as bad, hopefully when summer ends I'll feel better, Also I'm incredibly depressed. This is the first time I've had a problem with depression and yes I have talked to my dr about it and he's going to prescribe something, but I'm actually scared of where my thoughts go sometimes. "THIS IS NOT MY LIFE". Before all of this started I had three jobs and so much energy now I'm just..........pain!! Anyway, I'll let you know what I find out from the neuro at mayo about the facial pain and again, thanks for replying.

Hi Lori

You don't have to thank me, we're all companions in here fighting, or at least trying to understand this condition.

I've had my first contrast MRI and the full blood work. I will have a follow up NCV, to complete the tests before my next appointment. Hopefully I find some answers there.

I'm not a doctor but after reading so much, talking with the doctors, fellow neuropathy sufferers like you, I'm beginning to build a general picture.

SFN only means that the smaller fibers(in length) are the ones primarily affected by "something", it might be a virus, diabetes or an autoimmune condition, this last one seems to be the one that, as it is in most cases like Lupus, CDIP, Arthritis, can just be controlled to some extent, but it tends to slowly progress through time.

Autonomic Neuropathy is closely linked to SFN because the autonomic nerves are small fibers too, that is why a sweat test, like the one you took, is used to diagnose SFN, because an EMG covers just the large fibers(motor).

If the autonomic fibers are affected, like it seems to be your case, is quite common to have blood pressure issues, so yes the blood pressure stuff you're experiencing can be caused by SFN.

Heat intolerance, bladder problems, are also common presentations of autonomic dysfunction so It's not a bad idea to see a cardiologist, or even better, if you can see the Mayo specialist, he will run heart tests specifically oriented to detect if your heart is not responding well to changes in body's position, or physical effort. Those anomalies are a sign that the autonomic nerves that control this function in you, are affected.

Again, thats the vital reason for finding the underlying cause, specially if you got a viral infection like shingles or diabetes or any other known cause for this condition, that can be treated, in order to improve, stop, or at least slow down the progression of the SFN symptoms.

Now, besides all of the above, if there is not any structural damage causing your "trigeminal neuralgia", without being fatalist or anything, the only other cause that could match all your combined symptoms is MS.

Heat intolerance, autonomic nerve dysfunction , neuropathic pain and trigeminal neuralgia, are all textbook symptoms of MS.

BUT(this is a big one) if you have not eye issues(optic neuritis), motor issues(like weakness), trouble speaking, and even more so, if you have already got an MRI and/or lumbar puncture tests to discard this, you can rest assure that MS would not be the case in here.

Obviously SFN/Autonomic stuff can also cause all, but I believe that the "uncommon issue" here could be the "Trigeminal Neuralgia", because that would mean that a cranial nerve is affected.

If we can find a bright side to this, specially if there is still not an underlying(not autoimmune) cause detected in your case, finding out what's causing your face pain, could lead to find the cause of your whole condition, something that hopefully can be treated, and could help you to get better in all fronts.

But here I'm playing Dr. House, and this all is really beyond my amateur medical knowledge.

Finally on depression and/or anxiety, this all get to us, and we have to fight it
to prevent them to rule our lives. I feel the same as you, because I can clearly picture my self strong, filled with energy, just the week before this struck me and changed my life completely.

We have to learn that, even with this, we have to go on, this aint' over till is over so hang in there, we all share both your fears and despair, but also your hope and will to overcome this one day.

I wish for all of us, that this day comes soon enough.

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