Just so confused
 

Hi,
I have posted here before a few years back and now I am back because I am just so confused and frustrated and would like some insight. So I originally posted when I was 19 I am now 21. I will give a brief summary: After freshman year of college I began to experience the sensation of water running down my legs when walking in the heat. The next year I had stinging pain when I worked out (I was on the crew team) through my torso and legs. Symptoms went away for a long time only to return winter of my junior year where my clothing was painful on my skin for weeks on end almost like a sunburn that wasnt there. This pain was always on my right side thigh and side/torso mostly. I have had on and off occasional sensations (some painful, some just odd) since this all started. This past week while at work I had the water sensations in both legs all the way down for most of all of my shifts (once again heat started it because the heat in my building was turned on and I work in a kitchen). Like I said I will have long periods of time with no symptoms with sporadic episodes or just small sensations at random times. I had been seeing a neuro and had a lot of tests a few years back but I am just so confused by the pattern of the symptoms. They don't seem to be worsening or progressing from feet up like a lot of people say there seems to be no pattern to the symptoms or progression and I am so frustrated. I had a lot of tests and if any of these results would help I can tell you but the main one is a skin biopsy 2 years ago (when I was 19):

Calf ENFD = 8
Thigh ENFD = 9.71
Calf SGFND = 44.5
Thigh SGFND = 29.2 (this was the only value below 5%)

Please any suggestions or thoughts would be much appreciated I am currently working to get back into a neuro this winter.

Thank you so much!

Hope your symptoms get better soon.:hug:
There are some brilliant folks here to help you.
I have only been on a few months and several have done more for me than all the doctors.

This can imply a number of conditions--
 

--but given your age and the pattern I would more likely suspect something possibly going on in the lower part of the spine--perhaps some nerve compression in the lumbosacral area--has any MRI imaging been done there?

baba222 - thank you :)
glentaj - I had MRIs when the symptoms first started of brain and spine (looking for MS and structural abnormalities) and nothing was found. I also have had what I think is autonomic involvement - I was put on a beta blocker for unexplained tacchycardia.

Other tests:
EMG/NCS - had two first one showed some abnormalities, second one was clean
VEP - borderline normal
QSART - no sweat producion at the thigh at all but the rest normal
24 hr heart monitor - always showed tacchycardia episodes and sometimes skipping on heart

The biopsy results were summarized (because SGNFD) suggestive of SFN but not 100% sure but I am not so sure this is the problem anymore

Also another question....
I have read that symptoms of neuropathy can vary a lot. Does this apply to the amount of pain of SFN and if so would someone with mild SFN have the same biopsy results as someone with more severe? Also can the speed of progression vary from patient to patient? Still not sure what is causing my symptoms just though I would ask

Yes--
 

--objective symptoms of nerve damage can vary widely in type and intensity even among those with very similar clinical findings.

If there was no finding of any structural abnormalities or evidence of central nervous system demyelinating disease on MRI then the next logical step, given the somewhat ambiguous VEP/QSART results, would be a comprehensive small-fiber/autonomic work-up, which might not only include a lot of the laboratory tests from the Liza Jane spreadsheets (www.lizajane.org) but perhaps a repeat of the skin biopsy to check for any changes int he last two years. Fortunately, skin biopsy is easily repeatable, and the change in the numbers, if any, may give you some inkling as to how the situation is progressing.

I had asked my doctor about this previously (getting a second biopsy) and he says that usually this is done "down the road" for a repeat....how many years typically are in between skin biopsies before repeats are taken. Also he says there is no way to compare the small fiber nerves functionality from two years ago to today...this answer is very discouraging to me is it completely true? or what have people's experiences been with having multiple biopsies?

Skin biopsies can be repeated--
 

--many, many times, as they are minimally invasive. The frequency recommended depends on the clinical picture (and, often, insurance concerns), but in a neuropathy thought to be progressing, annually is fairly standard.

There really is no way to measure the small nerve fibers FUNCTIONALLY at all, beyond some autonomic tests like the sweat test that do give some information, indirectly, about how that function is working--they are simply to thin to place recording/measuring devices in. Then, too, the symptomology from small fiber damage can vary widely even in people whose biopsies look very similar.

The real value of repeated skin biopsy can be in seeing if the nerve density values rise or fall at consistent sites, what the condition of those fibers looks like, and how this correlates with perceived symptoms.

I'm sorry you are going through this so young...
 

Unfortunately, neuropathy without an obvious cause can be a long and frustrating road if you are looking for answers. My advice would be:

Have the emg/ncs repeated at a large teaching hospital with a neurodiagnostic dept. Having inconclusive results should get you a referral there as far as your insurance goes. Try to have all 4 limbs tested. Download the spreadsheets from www.lizajane.org. Get copies of all scans, reports, labs & organize in a binder. Take this with you if you can get a consult with a neuro at a teaching hospital. There are quite a few metabolic/autoimmune factors that can cause nerve damage.

Pay attention especially to B12 level and vitamin D. MrsD has stickies about these and tons of great information about supplements. Also do a search for mthfr mutation, a genetic mutation some of us have that affects the methylation pathways of B12 and folate.

Diet--cutting down on sugar and other simple carbs. You could try an elimination diet like the Whole 30 to see if it makes a difference in your symptoms.

Hope this helps!

glentajj - ok thank you. Out of curiousity what if my symptoms (sensitivity to clothing) is only on my right side ever and usually the trunk/side area? Does that indicate anything and is it possible to have neuropathy in a specific place or side of the body?

jenng - Thank you for your response. It is a little frustrating to be going through this while in college. Do you think there is a reason to get a repeat NCS/EMG if I no longer have large fiber symtpoms? I originally got these tests because I was tripping A LOT and my reflexes were reduced. I haven't had these problems since (another mystery). I will look into the mutation and the diet although I think I eat fairly healthy.

My doc got back to me kind of saying maybe we just need to sit and talk considering it has been a long time since we last had an appt. So maybe I will see what he says here I am just afraid he will tell me he doesnt know again and I just don't find that to be an acceptable answer anymore. I think the most confusing part of my symptoms is they don't seem to be ascending and some appear on both sides while others are unilateral. Thoughts on this? Also the running water sensation only comes on in heat could this also indicate anything?