Question for LYME IN MD

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georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 9/27/2009 8:53 AM (GMT -7)   
How did your neurologist diagnose you with small fiber neuropothy? I'm almost sure that I have this but have not been diagnosed yet.  about 2 1/2 years ago when I first got sick I went to a neurologist. He did a nerve conduction study and it was normal yet my feet and hands were numb and tingly. They also are very weak and heavy feeling. He thought that I probably had a bad virus and sent me on my way. Should I see another neurologist? What is IVIG? Does the neurologist do that treatment? How often do you do that? How much has it helped you?
I hope that's not to many questions! I just worry about this alot. Thanks  

Lyme in MD
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 9/27/2009 9:46 AM (GMT -7)   
Please don't ever hesitate to ask me any questions. For someone who has been around the block with this thing like everyone else, anyway I can help, I am happy to do it.

I was diagnosed by both exclusion with an EMG like you (to rule out neuropathy in major nerves), and through a skin biopsy. Very simple procedure. As I understand it, the biopsy is done to measure the peripheral nerve density(?--of those "small fiber" nerves closest to the skin) and compare it to that observed with normal "healthy" patients. What I thought was fascinating about this neurologist (had previously been to others) is how much he agrees with my Lyme doctor's theories about chronic inflammation and what causes it. Before I even had the EMG done, he DILIGENTLY listened to my history and complaints about my symptoms (asked questions my Lyme doctor had asked me at the onset--Constipation? IBS? Heel and foot pain? Facial and torso pain? Tingling? Numbness? Tinnitus? History of significant infections? etc. And I think the most significant similarity is that they share the belief that this neuropathy was brought on by previous or active infection (in my case, both EBV and Lyme).

I am currently considering the treatment options that have been proposed--oral steriods (Prednisone) or IGIV. All I know about the IGIV is that it is IV treatment that is very expensive, and I am not sure if BC/BS will cover it (and at what %). Since I just got diagnosed this past Friday, I have been scouring the Internet all weekend to try to learn as much about SFPN and IGIV treatment. I have heard that Prednisone (which I have never been on) can be problematic for some, so that causes me some heartburn, particularly with how many meds I am currently on. My neurologist also mentioned the obvious (plenty of Vitamin D--which I am taking already), and he mentioned another supplement I had never heard of before that is very good for neuropathies.

I have attached a great link here that gives you some good basic info on small fiber peripheral neuropathy and the biopsy procedure. Hope this helps. The madness of putting this puzzle together continues. Please note that this IS NOT my neuro (who is based in Annapolis, MD-this specialist is based in San Diego)

http://www.therapath.com/Overview.html

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 9/27/2009 3:15 PM (GMT -7)   
Thank you. I am going thur. to see an allergy/ immunologist. I'm sure that she will send me to a neurologist at some point. I was reading about the IVIG and it sounds kind of scary (using other peoples blood) and the possible side affects and the cost!! As far as prednisone goes woulden't that be bad for the LD? Isen't that a type of steroid? I was hoping for an easier treatment!!!!! Even if I did get the diagnosis the treatment options are sounding slim.
I am interested in the supplement that your neuro. was telling you about. Please let me know when you find out what it was. Let me know what you decide to do.

Lyme in MD
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 9/27/2009 5:17 PM (GMT -7)   
Yeah, not at all psyched about either option, to be honest. I knew IGIV was very costly (neuro told me that), but I learned this weekend through my independent research that it was sort of like receiving a blood transfusion from donors. Definitely doesn't sound like my cup of tea, but if it has had tangible results and I can afford it, I am so desperate at this point that I am strongly considering it.

I like the fact the SFPN is another piece of the puzzle, but like all of the other crap, there does not seem to be simple and cost-effective solution. I will definitely get you the name of that supplement. Like I said, it did not at all sound familiar to me, but I am surprised I am not taking it already. Hang in there!!!

georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 9/27/2009 8:15 PM (GMT -7)   
I'm hangin! It's a full time job trying to figure all this out. I need a dang secretary! LOL
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