Small Fiber Sensory Neuropathy

[smokeysmom]

My mother appears to have this diagnosis, the non-length dependent variety, and is being treated symptomatically (with Lyrica) She has had symptoms for approximately 6 months, no obvious triggers, she did have a very borderline glucose tolerance test, but her HgbA1c was only barely outside normal range.  There is not much in the way of academic studies on this phenomenon, probably because it is so unusual.  

My question is, is there anybody out there with these symptoms (paresthesias manifested by prickling and sometimes warmth) all over the body, including the peripheral extremities, trunk and head, who has either

1) Had the symptoms resolve
2) Found something other than neuropathic pain agents that works (i.e. Lyrica, Neurontin)
3) Found a sub-sub specialist who has been helpful

Any helpful comments would be appreciated.

WD in California

[smokeysmom]

Hi Jen, just my two cents. . .If I were you, and you already have an appointment for the EMG I'd just keep it.  No telling how long you might wait to get the follow-up and in the meantime, all the information from your Neurologist can always be copied and sent on to Hopkins when/if you decide to be seen there.  The more data you have to present to the Hopkins people or anyone else for that matter, the informative your visit with them will be and the fewer return visits you would have to make.  You might start collecting your medical record info now in anticipation, if you have had various tests done in different places.

Best wishes.  The East Coast has so many great medical resources!

[bowhunter0310]

Thank you for the prayers, first off.  I need lots of them.  I live in PA, so Maryland is close.  I am seriously thinking about making an appointment there.  I have to go in May to get a EMG done, but from what I read on the JH website, they do it there also, plus many more tests.  I may call and see how long the wait is for an appt and just bypass the EMG here with my new neuro.  I have to do something, in the last years its gotten worse.  Its scary.  I really feel for your Mother, its not fun, its annoying.  I wish I could just go back to how I felt 7 years ago before all this started.  I have to run now, but thanks for your prayers and mentioning the JH in Maryland, I never knew they had the neuropathy center there.  Take care, and give your Mother a (((HUG))) from me.
Jen

[smokeysmom]

Thank you for your input, I'm sorry to hear that you suffer from this too.  Are you seeing a Neurologist at an Academic center?  May I ask what part of the country you live in?  I found out about SFSN by surfing the web and came upon the website at Johns Hopkins Medical Center where they appear to have a department just for Neuropathies.  Unfortunately, my mother and I live in California.  At any rate, the research I've done has not yielded much except that most patients seem to be treated symptomatically.  One study in Israel with less than 10 patients did a trial of steroids and it helped half of them.  Other than that, there aren't large clinical trials.

My mother is 76.  She definitely finds that her symptoms vary from day to day.  Some days she'll feel like she has a string of good days and then it will seem to come back with a vengeance.  Initially the fact that she felt the symptoms in her head made it very puzzling.  My mother also had negative blood work, and negative MRI's.  There is such little known about it, her neurologist thinks it will resolve with time, however, he has never seen a case like this, so who knows?  Her symptoms started in her feet and hands and then started ascending up her body to her head.  She did not have any kind of preceding viral illness or take any unusual medications.  

It is somewhat depressing to hear that you have had this for 7 years and that it has gotten worse.

If you aren't being seen at an academic medical center or if you live near Maryland, you might consider Johns Hopkins.  I'd certainly take my mother there if we lived in driving distance.

Best wishes to you in any case, and perhaps your most important line referred to God's blessings.  When I read the postings on these bulletin boards it can be very depressing and one can only pray for blessings, mercy and healing.  I'll say a prayer for you tonight.

[bowhunter0310]

I have not been diagnosed with SFN yet, but my neuro feels that this is what I have.  I m awaiting a EMG, then if that is normal I will have the testing done for SFN which includes autonomic testing and skin biopsy.  The answer to your question is yes.  I have the feelings everywhere, everyday.  It all started 7 years ago in my face, then my head, legs, back, and now I am suffering from pain in my toes.  I have had many MRIs of brain and spinal cord, normal.  All my blood work has been normal.  I just had 12 tubes taken yesterday, and I'm awaiting the results to them.  In all, I think since the beginning I have had about 30 tubes taken, to try to find the cause to this madness.  I am not diabetic, nor do I have anything else show in my blood that causes neuropathy.  All I know is that I was very sick with a stomach virus of some kind before this all started.  The nausea lasted 3 months. Then the parathesia set in.  I am sitting here now and my face is burning.  This is a new one for me.  My face, in the beginning used to feel like a bug crawling on it, but over the years it has become worse.  I have not tried Lyrica, because of the weight gain.  I would not wish this on my worst enemy.  I hope your mother starts feeling better, I know exactly how she feels, and I pity her.  May God bless us both.

Jen