Hi Everyone!

Will try to make this short-I was a hairstylist and nail tech (lots of chemicals) for 16 yrs--after about ten years I started to suffer from asthma and mild pain in the bottoms of my feet. Both over time worsened. My foot pain would come in spells that would last for a few months and be gone for maybe a few weeks. I decided to go to college and learn something new to get out of that business really thinking and feeling that one day I would not be able to walk-that is how bad the bottoms of my feet had started to hurt (every part of my foot that touched the floor felt as though it had been pounded with a hammer). They would swell and be very, vey red.
So, I changed careers-went to a desk job--things felt "better" unless I did too much on my time off--though my feet and legs started to feel "ansy" while seated.
THEN--I got really sick with bronchitis and was hospitalized for 5 days. Doped up with steroids--which I feel do something terrible to me--along with other meds.
Since then, my body has gone haywire!!! The pain in my feet has worsened and is constant, and now is going up my legs and is causing major weakness. I have burning in my face, ears, backs of arms(that causes redness and heat to the touch),---sudden redness, swelling and numbness in last half of hands and fingers that comes and goes---these symptoms have gotten some better since seeing my neurologist and being put on Nuerontin, Lamictal, Clonipan(sp), and (for severe migraines)Topamax(sp??).I also have a rash on my outer forearm that comes up only if I'm under a lot of stress. Now, to add to it I am having spots in various places that feels like cigarette burns (you can actually see marks), the steering wheel burns my hands, along with touching any other object to my skin for any length of time. I cannot sit upright in a chair for very long, can't stand or walk for very long--
I feel exhausted all the time--and cannot even clean my own home for more than 30-40 minutes at a time because of the extreme pain in my feet and lower legs and also because of weakness.

I do not have diabetes--been tested-4hr--came out great. MRI of brain ok- except for sinus disease. Have Slight Spondylosis no nerve involvement. Hd plenty of bloodwork--with no results.

Neuro says its Peripheral Neuropathy--but he is sending me to another specialist at Emory University and is suggesting a possible nerve biopsy. I guess really just looking for the correct treatment....I really don't know.

Has ANYONE been through anything similar?? Or am I just out of luck? I feel like I'm dealing with more than just one thing--I guess because there is just so much to it.

SOMEBODY HELP!!

guess that wasn't short.

Have they run an autoimmune panel on you? Check out www.lizajane.org . It's a listing of testing that can be done. The rash might be indicative of vasculitis. Also read the stickies at the top of the page. They are full of years of info by a lot of people who have been there and done that. Also, gluten intolerance is a possibility.

I'm sorry you are suffering so. A lot of us can relate very much.

The weekends are slow. It's also vacation time for some folks.

Billye

first off my ideas agree with Billye.

Females have alot of autoimmune issues.

But pain like that also occurs in hypothyroid patients.
That is how mine started 30 yrs ago with foot pain only.

Then there is the bronchitis... Were you given Levaquin or Cipro for that? If so, there are significant numbers of people who develop nerve damage from those drugs.

Then there is the potential for gluten intolerance. The appearance of the rash may suggest dermatitis herpetiformis which accompanies the reactions to gliadin, from gluten.
So testing for that may be revealing.

The solvents for nails...acetone and xylene do affect nerves.
But progression after removal of them from the environment is less likely.

Much of PN diagnosis involves things that mimic and/or cause it.

Once you have a cause, then one can proceed with using various agents to improve things. The drugs you are taking do not heal you. They only suppress symptoms.

Tests you can have done are:
B12 (MMA also)
Vit D
folate
Autoimmune markers
IG's for celiac/gluten
skin punch biopsy (not sural)

Those are for starters.

Topamax may cause acidosis in some patients. You should have a serum bicarbonate run, to see if you have this side effect. Acidosis causes many parethesias (odd skin sensations). Doctors should know this, as they were sent warning letters by McNeil to test for bicarb regularly in their patients taking Topamax.

Had all but the gluten test. i will ask about it. I posted a new thread about my "diagnosis"
from ne Dr. today.

Thanks so much for all the info.

T

Hi. Maybe I missed it, but you didn't mention having a spinal tap.

Ever had one? That's how they diagnosed my husband with an auto-immune disorder. They found protein in his spinal fluid.

Just a thought!!

Take care,

melody

Have not had spinal tap. I hope it don't come to that. It does'nt sound fun---but if it will help with a real diagnosis-you do what you have to do---I posted my new Dr.'s "diagnosis" from today on a new thread.

Thanks,

Tina