I've seen the doctor(#1) who did the initial testing on me and he obtained the nerve results from the other doctor(#2). Needless to say, doc #2 never tested my feet while thats where doc #1 found multiple problems with my nerves. He specifically mentioned the sural nerve as one. His plan of attack is to order a big bunch of bloodwork, some of which had been done previously like in the last 2-3 years, a glucose tolerance test, and he is also ordering another test and will redo the EMG, starting with the feet. Doc #1 is really thorough and giving this his all. I can't believe Doc #2 would just dismiss me when he didn't even do a thorough EMG, but after reading so many stories of others who have had similar treatment, I really shouldn't be surprised. Anyway, through all of this, my biggest complaint has been my feet with the pain, numbness, and the host of injuries that keep happening without my knowing about it, or rather not feeling it.

So any thoughts about neuropathies that start in the feet, involving the sural nerve? Or any thoughts about this nerve?? I know he is doing the GTT, but my blood sugar was on the rise because of spinal injections(a bunch in a short span of time) but it has returned to normal, so I'm not diabetic. And I've obtained my fathers neurologic records for him to review since I suspect some form of hereditary condition. My mind is in overdrive wondering what all this will show so as usual, bear with me.

The sural nerve is a sensory nerve that runs along the calve and into the outer part of the foot. I have damage to my sural, tibal, and peroneal nerve in my left leg and sural and peroneal in my right leg. I am considered idiopathic at this time, all my blood work has come back normal so far. The damage I have is affecting the mylen covering and also the axons. affecting my sensory and motor functions. I have mild sysmptoms most of the time with occassional burning sensations is my thigh and left calve. What bothers me the most is the weakness in my left knee and the falling asleep feeling in both feet and ankles. I am only 41 and was diagnosed 7 months ago. By reading the other posts, it looks like it can take a long time to find a cause.

Many people will say don't do it. You can have permanent damage to the nerve, and the results do not add anything new and you can have pain from it forever!

http://content.karger.com/ProdukteDB...asp?Doi=117372

Consider this very carefully!

Get a fasting INSULIN test to show more evidence of impaired glucose metabolism. This is a simple blood draw, and often predictive of insulin resistance.

Mrs. D, thank you for posting that link. If he wants to do a biopsy, I'll definately say no. I get fasting insulin tests every three months and my PCP has been doing an A1C to ever since my glucose started to rise from all the MBB's that were being done, back to back for predictive neurolysis results, and that is well out of the range in the low 5's. So if he does decide to do the GTT, at least its one test that hasn't been done so far. I'm still pushing for genetic blood testing as I feel this is going to be a hereditary form, based on my fathers complaints. I wish I knew what it takes to be able to get these done and what sort of hoops the insurance company makes the docs go through to justify that. If anyone has any insight, I'm all ears/eyes.

I just want to reiterate what MrsD said about the nerve biopsy. I had one almost 15 years ago. I had awful phantom pain for many months which can be disabling itself. The pain did finally subside but of course there is permanent sensory loss from the calf and entire side of foot.

Like she also said, the results did not add much to the picture...not enough to warrant the test. They can tell as much with skin biopsy to diagnose small fiber neuropathy and it has no lasting side-effects.

Thank you for sharing this with me. My EMG got moved up to tomorrow so maybe he'll have more info for me when its over. I'm also hoping his nurse reached out to my PCP and that he'll possibly not do the GTT since my blood work has been so good. If not, I'll mention it to him.

1]Many insurances don't cover it unless all else proves inconclusive...and then the probability of infection is highly increased due to the procedure.
Here is an option of IVIG? From one PLAN: criteria? Read!
http://www.tuftshealthplan.com/provi...e_Globulin.pdf
Just 'web up' Sural Nerve Biopsy And learn about the pros and cons of it being done... Con's are it's PERMANENT DAMAGE? Prone to infection, due to the neuropathy aspect. Pro? IF IF IF handled correctly that nerve biopsy can be a deterimate for diagnosis and disability.
When I was approached to have it done? It was not by my normal Neuro? It was one a 'second opinion' was from...but? He seemed too eager to do it? Almost as if to get it under his 'belt' before this procedure was no longer allowed. I argued with him politely about this so he referred me to his 'mentor', the neuro dept head of a different teaching university from the one I'd been diagnosed from? Guess what? That Head off the bat, said, I've got XXXX And I should be confined to a wheelchair to get the therapy I'd been getting! I responded: I'd met 7 of 9 major insurance criteria for diagnosis and treatment. The fact that I am NOT in a wheelchair is testament to correct treatment Don't you THINK? I believe this 'head' has begun to rethink his thoughts on diagnostics? And is publishing to that 'rethinking'. Good for him? GREAT for US in the long run!
Lastly? I declined the biopsy, because I HOPE and at times feel than some parts are HEALING! If that's cut off? It's a NO go.. no how. I got the Diagnosis w/o this biopsy, but, others do not have such an easy path.
My heart is with you with whatever your decision --- just be sure it IS truly informed? I mean, do you jump off into ANY POOL? Not knowing how deep it mite be? Same thing in some ways...only both if gone wrong, can be permanent. Me? I'd like to leave the door open... look into 'punch' biopsies here and at Johns Hopkins! Hugs and good things! - j

Thanks for sharing this information. I've already done the punch biopsies and they were sent to Johns Hopkins so it doesn't make sense that the biopsy of this nerve would be any different then those. He has taken a lot of time with me over the course of two long appointments, so I suspect that tomorrow will be more than the EMG and perhaps it will shed some light on this. At least, thats what I'm hoping...

Todays EMG(by Doc #1) showed that the medium nerve fibers in both of my feet are not responsive. He turned up the machine to 70(?) and got no response at all which is what his first test on me nearly two years ago showed. He isn't considering a biopsy but sent me off with a ton of bloodwork, some sort of urine testing in it as well, and I'll be going back for another EMG next week. This one will be done with some hefty pain relievers. He told me that Doc #2 only tested the sural nerve and did not do the feet. So I'm glad that this test validated the earlier one and hopefully this will lead to a firmer diagnosis.