[Eskiemom]

Hello,

I have a mystery neurological illness on my hands for the past two years. I match small fiber from what I read on this board, but doctors don't seem to think so.

My pain started in my outer left calf and rt ankle two years ago. It had progressed in spotty places around my legs. At one point, a neurologist said she thought I had pn. So I went for Relief Neuropathy treatment. A new doctor took over my care and said she did not believe I had it because I test negative. I've seen over 20 doctors without any clear answer. I twitch constantly and even have rolling twitching thru my legs. Cramping, numbness in small areas of my feet. Burning is most common. I can feel the tuning fork for beyond 15 seconds.

The Relief neuropathy doc and a few of the neuros said my symptoms don't match that of pn and I don't clinically match. Maybe small fiber?

A had two fillings replaced and the numbing injections have left that side of my face in pain and sensitivity and twitching.

I continue to get worse than two years ago. I have done all the supplements suggested, everything that I can find short of rx. No halting or improvement.
Two weeks ago, I did have some light therapy on my feet and legs. Now, I have stabbing pain under both big toes.

I'm a mess and getting worse.
Anyone else use light therapy?

[Neuroproblem]

Originally Posted by Eskiemom

Hello,

I have a mystery neurological illness on my hands for the past two years. I match small fiber from what I read on this board, but doctors don't seem to think so.

My pain started in my outer left calf and rt ankle two years ago. It had progressed in spotty places around my legs. At one point, a neurologist said she thought I had pn. So I went for Relief Neuropathy treatment. A new doctor took over my care and said she did not believe I had it because I test negative. I've seen over 20 doctors without any clear answer. I twitch constantly and even have rolling twitching thru my legs. Cramping, numbness in small areas of my feet. Burning is most common. I can feel the tuning fork for beyond 15 seconds.

The Relief neuropathy doc and a few of the neuros said my symptoms don't match that of pn and I don't clinically match. Maybe small fiber?

A had two fillings replaced and the numbing injections have left that side of my face in pain and sensitivity and twitching.

I continue to get worse than two years ago. I have done all the supplements suggested, everything that I can find short of rx. No halting or improvement.
Two weeks ago, I did have some light therapy on my feet and legs. Now, I have stabbing pain under both big toes.

I'm a mess and getting worse.
Anyone else use light therapy?

Alternative treatments, sometimes are based on assumptions and not scientific data, so theres a risk of injury there. Your symptoms sound like it could be Neuropathy, caused by spinal issues, or diabetes? did you ever get checked for metabolic disorders?

[Eskiemom]

Originally Posted by Neuroproblem

Alternative treatments, sometimes are based on assumptions and not scientific data, so theres a risk of injury there. Your symptoms sound like it could be Neuropathy, caused by spinal issues, or diabetes? did you ever get checked for metabolic disorders?

No diabetes or metabolic disorder or anything. No nerve impingement in back -- back looks better than my age.

[mrsD]

Vaccines? Drugs? (statins or antibiotics like Cipro, Levaquin and Avelox? Flagyl? ) Viral illnesses?

Exposure to toxins, heavy metals?

There are lots of causes of PN.

[Eskiemom]

Originally Posted by mrsD

Vaccines? Drugs? (statins or antibiotics like Cipro, Levaquin and Avelox? Flagyl? ) Viral illnesses?

Exposure to toxins, heavy metals?

There are lots of causes of PN.

I take no prescription drugs. Had antiobiotics 9 yrs ago after a surgery. Other than that, no history of antibiotic use - maybe three times as a kid.
I had chicken pox when I was a kid.
Four tests for toxins came back negative. Recently had two mercury fillings replaced. No toxins that I'm aware of. I have never handled toxic substances. Haven't been sick for over seven yrs but no idea about a viral exposure which was asymptomatic.

[Eskiemom]

Originally Posted by mrsD

Vaccines? Drugs? (statins or antibiotics like Cipro, Levaquin and Avelox? Flagyl? ) Viral illnesses?

Exposure to toxins, heavy metals?

There are lots of causes of PN.

Forgot to add that I have not had a vaccine since 2010 and that was the MMR booster. Before that, none.

[Ragtop262]

Welcome Eskiemom. I had laser therapy done for a while - probably a half dozen treatments. Didn't seem to do anything (positive or negative) for me.

It is definitely hard to get a firm diagnosis for a lot of these type of disorders. The SFN in particular seems to be tough unless you get a positive skin biopsy. But a lot of times (like in my case) the doctors don't seem interested in even ordering the skin biopsy.

My symptoms are somewhat similar to yours, and I too have no firm diagnosis - just the general description of "Disturbance of skin sensation". Which, of course barely scratches the surface of the symptoms.

Keep up with a good diet, exercise to tolerance, supplements recommended for PN, and stress reduction to the extent you can. It may not cure you, but it's the best thing we can do until there is a diagnosis and identified cause that can be treated.