same experience with neurology. Cornell was the only place that diagnosed acute small fiber neuropathy. I was ok for teo and a half months sleepwise. Then i started needing pills to sleep. My symptoms peak at night. Dealable during the day but the anxiety of not knowing my symptoms at night took its toll.

The sunburn and allodynua with sheets gets better with time? They fave me lidocaine cream but its not safe putting it on half your body. Neurontin helps but doesnt get rid of the scratchy sheet feeling. Its annoying symptoms get worse with poor sleep snd anxiety.

The doctor is going to repeat my emg and try a trial of steroids. There is an article from israel where they had dramatic rrsults. But was high dose.

Im just scared. Three months of focusing on this has taken its toll mentally and physically. Its the not knowing whats next that scares me too.

You seem to have survived. Scary that u still get symptoms. Sucks that this is so rare.

Hey glenn. I had the skin biopsy. My numbers put me above the low normal range but they didn't look great. probably less than 20th in the thigh and calf. As you've said on other posts...who knows where I was at before all this. They want to do a tap for completeness sake. Cant say im thrilled about doing a test like that that is likely to be normal.

If offered would you have tried steroids or IvIg at the time?

How do you distinguish between pain from nerve damage and from regrowth?

Did you ever have other paresthesias? I feel like water is splashed on me from time to time when it clearly hasnt.

When you say you have flares? what do you mean? pain? is it related to stress or sickness or just random? is the pain like when u 1st got sick?
Do you find that you attributed feelings that may have been normal as abnormal since you were hyper aware of all body sensations?


Did you take supplements? sometimes I feel like they make my symptoms worse... probably just random.

Sorry about the barrage of questions.

Hi there. Just was reading with interest both of your symptoms which are really similar to mine. I have had some sort of neuropathy for 8-9 months with initial symptoms of burning in my toes and fingers which seems to have got a little bit better.

But more recent I have had like a dull ache in my ankle bones, my acromion joints and occasionally elbows. The ankle ache is always followed within about 5 minutes by a burning pain in my toes like gout almost and big toe. I have had all of the blood testing and a nerve biopsy and the neurologist has discharged me as having an idiopathic or viral neuropathy.

I have been really concerned about the ankle pain too but have found that voltaren is actually helping but I don't want to take it for a long period. I am now going to see a musculoskeletal expert to rule out that side of things. All the best and try not to lose sleep with worrying. I am learning to live with it and the flare ups seem to be very slowly lessening.

--have tried steroids or IVIg had been offered to me at the time, but without any abnormal results beyond the skin biopsy--no abnormal levels of autoantibodies or high inflammatory markers--there was no direct evidence of a process these would address (though it is possible I was experiencing autoantibody activity unique to me).

I've done a lot of supplements over the years, trying various things one at a time and adding/subtracting. Currently I take a 25mg B-complex, 50mg R-lipoic acid, 225mg magnesium citrate, 1200mg fish oil, and 1000 units of D3 each day. I toss in a 1000mcg methylcobalamin B12 lozenge twice a week. I had tried acetyl-l-carnitine and Cq10 in the past but couldn't discern any additional effect from them.

You are right in suspecting it is not always easy to distinguish worsening or healing through upticks in sensory symptomology except in long-term retrospect; with healing the symptoms gradually reduce but this may not be noticed for weeks/months. I keep a very detailed diary so I can go back over time and compare.

I am quite prone to compressive effects given the probable healing of nerves in pathways alternate to my original ones. In fact, for the last week I am having a flare that I think is self-induced; I am an avid weighlifter and did something to my upper back on March 15 that seems to have resulted in tightening/tingling in the high upper back between and under the shoulder blades, along with tingly stinging along the upper arm and lower arm dorsum down into my hands, especially between first and second knuckles. This seems to wax and wane with position--hunching forward or sitting at the computer (!) is not good, standing very straight is better. I have had additional issues with my C5/6/7 cervical spine in the past and this may well involve them, and also possible involve the thoracic outlet/brachial plexus area: the underarm vertical nerve interconnections among branches of the C5 through T1 roots, given the apparent involvement of the radial and medial nerves in my upper extremities. (I do know from our boards how common brachial plexus/throacic outlet issues are for weightlifters; building muscle on either side--pectorals, lats, traps--can constrict the area. I'm in sort of hiatus from muscle building right now and trying to keep the area very gently stretched--symptoms do decrease when I am stretched and warm. Of course, I had increased weightlifting with the goal of reducing/controlling insulin resistance to fight pre-diabetes. No good deed goes unpunished.)

thanks glenn! i think you missed your calling. you shouldve been a neurologist.

yeah it's difficult not attributing every symptom or weird feeling to SFN. it's hard to tell what's what. after doing the LP, i'll be at the end of my diagnostic journey i think. not sure if theyll offer steroids since mood wise i havent been in a great place. ivig also seems unlikely as well. ivig seems to help some people a bit but its not a cure. steroids sometimes really help but some people they dont or the effects return when the dose is tapered. i only take neurontin at night since during the day i need to be awake. unfortunately by the evening things are pretty tough to take.

be careful with weight lifting... as we get older our bodies are less forgiving of repetitive stress. try switching to cardio. try physical therapy for your neck.

btw do you ever get the flu shot ? or too scared ?

ever use anything for your skin topically during that time? lidocaine cream works for me but you cant really put too much on. everything else just aggravates the situation

Hi Mickey M

Just reading back through your posts and this stood out. If you were on Prilosec constantly for a couple of years then this may be the cause of of your neuropathy - Proton Pump Inhibitors (PPI) such as Prilosec (Omaprazole) can reduce the absorption of Vit B12 causing a deficiency. B12 deficiency symptoms can include Peripheral Neuropathy.

Have you had your B12 tested? Be aware that the ranges often used in the US are out of date. You need to be over 400pg/ml.

If you haven't already looked at it there's more info on the B12 sticky:

http://neurotalk.psychcentral.com/thread85103.html

If this is the cause for your neuropathy then neither steroids or ivig would be the usual treatment.

All the best for your search to find the cause and get treatment.

Was on it in the past. Not for a while. This was so linked to my illness. Either antiobiotic or the infection. Doc thinks infection but who knows

--I am a little worried, given my acute onset history.

That is not to say I am anti-all vaccines; I do get my boosters. Last year I got a tetanus booster with no problems.

I am fortunate that I seem to have considerable resistance to influenza strains--in my tutoring work each year I'm sure I am exposed fairly often, but do not seem to have gotten the flu in many decades. (Or maybe I'm just fortunate with the hand-washing.)

i had the pneumovax... am due for a booster next year. not sure if i should do it. didnt friggn protect me this time around! i used to think i had good immunity but then after having young kids.... i realized not so much.

just curious what dose of b6 is in your b-complex? im scared of b6 a little. and how much r-lipoic acid do you take? that ones tough to find ... they say 600 mg for neuropathy but thats seems like that would cost a lot. 100-200 seems more doable. most of the research saying that works is for high doses of IV. do you take flax seed oil or just fish oil? im trying your regimen out. ill let you know how it goes. hopeful it works or at least has a placebo effect

btw, did you get dry skin on your legs after your ordeal? i notice my skin is super dry like it never was before but moisturizer just irritates me.

--only has 25mg of the B's in each capsule for the most part, except for the lower B12 dosage (125 mcg; I take B12 lozenges separately).

I take R-lipoic acid at 50mg each day as many years ago I did have some acidic effects with a 600mg/day dose of alpha lipoic. R lipoic is the newer generation of lipoic composed of only the active racemic right handed molecules (the left handed ones that are equally present in alpha lipoic are not biochemically active in most bodies). The anecdotal evidence is that if one take R-lipoic one can take six to ten times less dosage to get a roughly equivalent effect, and that might well keep digestive issues minimal.

I have been suffering since March 15 with the "burning skin" as my son likes to say, but as I mentioned this time I think it is self induced due to weightlifting injury to the thoracic outlet/brachial plexus areas,, given my shoulder pain and spasm and the arm/upper chest/upper back distribution of the symptoms. Severity does seem at least somewhat correlated with position (at the computer is bad, of course) and degree of tightness in the scapular/latissimus areas. Given my history I do seem to be highly prone to compressive issues; when my small fibers regenerated to some extent I suspect they regenerated in different configurations than originally and probably have looped around or through a lot of tissue that can easily compress them. I am going back into Cornell Weill on April 8 to see if I can get some imaging done. In the meantime, no weighlifting and stretches suggested by our throacic outlet/repetitive stress injury crew.