Hi all! I'm new to NeuroTalk but glad I finally found it.

For the last 8 years or so, my feet have been a pain. It started during physical therapy for a knee injury/surgery. The pain originally concentrated in one area on the ball of my right foot. There was burning in both feet too but it wasn't extreme. With time, the burning intensified and worked it's way up my shins.

Between the pain in the ball of my foot and the burning pain in both feet, my ability to stand or walk became limited. I couldn't wear normal shoes. It was slippers or crocs or whatever...as long as it was big, loose and soft.

I've seen several podiatrists, neurologists, general practitioners and a pain manager. Nobody knows what I have. Tests - blood work, EMG, MRIs, etc. - look normal to them.

It's been very debilitating. When I had office job so it was easy to put my floppy shoes under the desk and take pain med. That stopped after a lay off and developing very bad reactive airways disease. When I finally got some breathing back, I decided to be semi-retired and drive a school bus.

The problem was that, as the foot pain grew, so did the prescribed pain meds...and you can't drive a school bus on pain meds. So finding a job at 59 with limiting medical issues is difficult, at best.

The pain in the ball of my foot has been reduced with a series of injections. But, I still can't do too much - like stand for more than fifteen minutes.

I take Tramadol and Lyrica. Cymbalta was prescribed but that made me sleep constantly so I took myself off it. I have a prescription pain cream. Does it help? I have no idea but I think not since the pain is still there. I've even taken Vicodin (for kidney stones) and even that doesn't touch the pain.

I used to be very active. Not any more. The physical therapy that I was doing when it started was from a martial arts injury. Since then however, I've put on twenty five pounds and work in my garage for a few hours every day to get some movement/activity otherwise I'd be sitting in a chair with my feet up.

Other than tinkering, I no longer work because I can barely walk, but, even while seated, my feet burn and hurt ALL the time, which makes concentrating on anything almost impossible.

I've had normal EMG/NCS test (but research that I've done on SFN says it's normal to have a normal EMG/NCS). My B-12 and loads of other blood tests are always within ranges. I don't drink.

I live 60 miles north of Philadelphia, PA. None of the many docs I've seen ever mentioned SFN. I just recently learned about it and am pursuing it (skin biopsy) with my primary. On Wednesday, she referred me to a neurologist (again) to ask about the biopsy. Today, I'm told the earliest appointment with neuro is January 2016. (I could probably be seen at the Mayo Clinic before then, geez!).

There's got to be a better way to get dx'd and medical help. It's like a never ending battle.

Have you considered an expert chiropractor, or adv PT that has a low level laser ( also called soft laser or cold laser)??

If an injury was involved perhaps a nerve is pinched or some misalignment?
The chiro I went to adjusted any & all joints as needed and used LLLT (laser) also, it worked well on my Plantar fasciitis.

--and can tolerate a little travel, I would recommend contacting the Cornell-Weill Center for Peripheral Neuropathy (Cornell and Columbia are part of the New York Presbyterian hospital system) in Manhattan. It is one of the most comprehensive clinical research centers in the world for neuropathy, and they absolutely do a major long initial examination, and lots of testing.

I have SFN and you are correct...all my other tests were normal. My skin punch biopsy was done by a foot/ankle dr. I believe some dermatologists also perform this type biopsy.

Please keep us posted.

Debi from Georgia

Welcome, Badmonk! I have SFN with no pain. Just uncomfortable muscle seizing, jumping, numbness, shaking, and PRESSURE! It is sooooo weird. I cannot sleep and cannot get comfortable ever! I take Cymbalta, gabapentin, and Lunesta. I am on a trial dose of prednisone.(I had to ask for it from PCP. I've basically been my own dr!) It's not helping. I see my THIRD neuro doc on 14th. Trying to get dx and treated has been a nightmare!! I used to be active now I can barely walk!

Hi Glenntaj,

Is there a particular neurologist you recommend at Cornell-Weill Center for Peripheral Neuropathy? Is it difficult to get an initial appointment or a long waiting list? I'm having trouble finding a knowledgeable, reliable, open-minded neurologist to help with my type of neuropathy. My case really needs further investigating and different treatment options... I've been getting worse and am really so scared.

Thanks

--is Dr. Russel Chin, who not only had done a lot of research work in autoimmune and other neuropathies, but actually has a sense of humor for a neurologist (a very rare quality).

He absolutely gave me the most thorough physical exam--not just neurological--I ever had the first time I went there (almost two hours).

Indeed, though, the waiting lists there are quite long, and the doctors there don't take every insurance plan. But I think anyone trained at Cornell-Weill/Columbia Presbyterian and having the resources of those facilities would be a reasonable person to see. (You can request to be put on a cancellation list, if you have the capability of dropping everything and going in there on very short notice.)