Yes they did but the irony was everything came back normal expect white blood cell count was high --they brushed it off-- to I must be fighting a cold. I had pain in my feet and legs tingling and sometimes I felt pain in the bones of my tower leg tibula area. The other symptom was I felt so itchy my legs but mainly my back. No rash-- but it felt like posion ivy. Once I got biopsy confirmed it they put me on Topomax and lidocane patches that helped alot.My doc re-ran blood test after diagnosed and that when the thyroid number had changed and both dr felt this may be the cause. Since my SFN--I had melanoma in the same leg discovered 18 months later and few years after that I had neck fusion. I felt very sad because I was always very active and fit my whole life and thing seem to spiral out of control. Maybe that to much information but I thought I would share my story.

Lidocane patch and small fiber neuropathy
 

I was diagnosed with non-diabetic SFN last May, I can live with the pain and hot/cold lower legs during the day but at night I frequently remove the covers for an hour or so and put them back for a couple hours all throughout the nights, needless to say I don't get much sleep.
I have been seeing a Neuroligist since may and he has done all the testing to determine what causes it, and all the prescriptions with no results. I have tried every supplement mrsD and others have suggested, none have worked. Now I take 50 Mg Tramadol after supper and another at bed time. I tried 100 Mg at bedtime and I stay hazy for hours after I wake up.
I have had 5 back operations due to severe Sciatic pain, the last being fusion of L3, L4, and L5. The pain, needle pricks and numbness I have now seem to follow the same path as the Sciatic nerve but the Neurologist says only 4% of SFN is caused by nerve damage and he recommended Lidocaine Patches. I don't have prescription insurance and they are extremely expensive. The instructions say to put the patch on the pain area, that would be on both lower legs and feet! Sounds like I would need about 10 patches per night! If the pain is radiating down the Sciatic nerve from damage in the Lumbar region it seems logical that 1/2 of a patch in the lumbar region would work.
Any comments?

Really, I have found the medical profession has no clue as to where to put the Lidoderm patches. Even the drug company does not help. I asked a salesperson at a CE event and she said nope.. they don't recommend placement.!

If you know you have back issues, and some sciatic compression, I'd put them only on your back...based on your test results of where the compression is. Don't worry about the end points of pain. Those spots, are really referred pain sites, and the source is most likely higher up, along the spine.

Thanks mrsD, I knew you would agree with me. I can't get a scrip till Monday, one more confirmation and we'll know 3 intelligent people.
Putting it at the injury makes more sense than at the pain. No matter how bad the Sciatic pain was I never had lumbar pain, weird :-)
Thanks!

mg neck prob
 

Hello...I take it you found out about your thyroid problem after your neuropathy started? Did they not test you for thyroid problems the first time you saw your doctor about your symptoms? I am asking because my GP has tested my thyroid repeatedly. I have many symptoms of hypothyroid. My GP only uses the TSH test and that has come back in their normal range which is up to 5. But I have researched it and read that anything above 3 is considered hypo and also that the TSH test is really irrelevant. What type of thyroid problem do you have? Have you noticed an improvement in your neuropathy since starting your meds? I also have lots of throat pain which makes me wonder:rolleyes:

Thanks!

nodsirrah--
 

--how was the small fiber neuropathy diagnosed? Was there specialized autonomic testing (such as tilt table), sudomotor axon reflex testing, qualitative sensory testing, or skin biopsy?

The reasons for my asking is that many of your symptoms might well be explained by the spinal problems you've had. It's often very difficult to distinguish between nerve problems with the spinal cord or nerve roots and problems with the more peripheral nerves, as the symptoms may be exactly the same. This is why investigation into the genesis of neurological symptoms is often long, costly, and very much a process of elimination. But I'd be wary of a small-fiber neuropathy diagnosis without clearly abnormal results from such specialized small fiber testing, especially inasmuch as you have documented spinal issues.

Hmmm... I almost wish I hadn't read that.

Let me explain: my PN had a very clear starting point: I was having serious back problem with some pain radiating down my leg. I could really feel the path of the nerve if that makes sense. The pain then moved downwards until my feet were also slightly painful. This all happened in about 3 weeks.

I was first treated by a specialist who noticed that my back had some problems (forgot the dx), and he managed to relieve the pain with some manipulations.

But because I didn't fully recover, I was sent to a neurologist, who - upon me admitting that I was a serious drinker - diagnosed I had PN, without any further testing. It made sense, so I never really challenged the diagnosis.

I'm now wondering if further testing might be useful. (my back is still killing me BTW)

glentaj
 

[QUOTE=glenntaj;957591]--how was the small fiber neuropathy diagnosed? Was there specialized autonomic testing (such as tilt table), sudomotor axon reflex testing, qualitative sensory testing, or skin biopsy?]

My Neuro did the skin biopsy then sent it to Therapath in New York:
A. Right Thigh-Value 3.6, Abnormal <6.8
B. Right Calf-Value 1.1, Abnormal <5.4
Diagnosis:Skin with significantly reduced epidermal nerve fiber densistant with small fiber neruapathy in both samples.

I honestly believe my Neuro was not very familiar with SFN until the biopsy "surprised him". On my last visit I asked about his experience and he gave me a strange look and said he was not above getting a referal! He printed a check list from Mayo Clinic showing possible causes of "Peripheral Neuropathy" showing all the causes that he had checked for except one. Then he did blood work for Lead, Arsemic and Mercury which came back negative. I asked him again about if my previous back (Sciatic nerve) injuries could be a possible cause and he told me nerve injuries only amount to 4% of neuropathy.

I believe he is one of the too many Neuros that do not know that SFN is in a sub-classification of Neuropathy and should be treated as such! Non-Diabetic SFN falls into a more mysterious catagory.

Last week I sent very specific emails, including the tests performed and my back history, to many Neuros in my area and in the state of Georgia requesting help afor SFN and have not heard from any. I also sent one to Dr. Lan Zhou at Mount Sinai in New York, she said she would assist me if I can get to New York. I called Medicare and they said they would not cover travel and expenses outside Georgia and living on Social Security makes that impossible.

I feel, like a lot of non-diabetic SFN folks that there is no hope and I will have to rely on medications for a reasonably decent life.:mad:

Just remember, non diabetic doesn't mean eating a diet for nerve and mitochondria healing can't help. I have very good glucose levels and A1C and I even keep track at home. I am careful about carbs and eat a very good diet and I have seen great results when this was all added to my supplements. My integrative MD suggested it and we were both happy about how I responded.

I am not a diabetic either, and have found much relief in eliminating sugar from my diet, taking the recommended supplements, including benfotiamine twice a day, magnesium lotion on my arms (inside) before bedtime, and r-lipoic acid, methylcobalamin, D-3, etc.