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-   -   anyone like me????? (https://www.neurotalk.org/peripheral-neuropathy/34299-anyone-like-me.html)

horsebrokeranch 12-19-2007 11:48 AM

anyone like me?????
 
i am on my 11th nueroligist, i have small fiber neuropathy i am 39 years old male and i am in extreme pain!!! i can barely do anything, cant sleep cant be on my feet for more then an hour. the pain is 24 hours a day. i have had it since march 1st 2006 at 2:00 pm. my doctors are looking for a reason as to why i have it . i am going to barrows neurological institute right now, and have already been refered to another neurologist there (neuro surgeon).i have alot of symptoms of ms but inconclusive on mris. i do not have diabetes, lopus nor aids. i get relief with hot water and when i dangle my legs. just relief the pain is still there. i have had every test imaginable done on me, and i dont know what path i should be on next. i need suggestions and need to know what to expect in the future if my diagnoses remains just small fiber neuropathy. any suggestions would be great!!!!:)

joca2002 12-19-2007 12:45 PM

What happened on that specific date and time? Did you suffer an injury, take some medicine or do anything unusual that day?:confused:

cyclelops 12-19-2007 01:28 PM

I have idiopathic small fiber neuropathy all over....but I didn't have a sudden onset. My onset was insidious so I thought it was all in my head for quite a while. Your case sounds very unusual. I hope they can get to the bottom of it.

glenntaj 12-19-2007 05:50 PM

There could be a lot of possibilites--
 
--although an autoimmune molecular mimicry cascade or toxic exposure is more likely for an acute onset (did your condition come on really fast)?

Also, you say you've had major work-ups, but in my experience most people don't get a complete one that easily--take a look at the www.lizajane.org testing charts and compare (and use them to track your test results over time--very good for spotting patterns/trends and for organizing your history for the 12th neurologist).

MelodyL 12-19-2007 05:54 PM

Hi. Welcome to our little group.

I assume you have had a lumbar puncture.

what did it reveal?.

cyclelops 12-19-2007 05:58 PM

I assume you have not been out of the country, and they tested for all the obvious stuff such as Lyme?

I also assume they ruled out CIDP Chronic Inflammatory Demyelinating Polyneuropathy?

horsebrokeranch 12-19-2007 06:50 PM

Quote:

Originally Posted by joca2002 (Post 178184)
What happened on that specific date and time? Did you suffer an injury, take some medicine or do anything unusual that day?:confused:

i am a cashier at a grocery store. the only reason i remember the time i thought i hurt it while working like i pulled a back muscle or something along the line which has proved to be not the problem. i may have had a build up of this problem but not realized it?

horsebrokeranch 12-19-2007 06:55 PM

yes it did, i was working thats why i remember the time i thought i hurt it there.... yes i have had every blood test. i had metal toxicity hair and bloodwork done. what toxicitys are you refering too?

mrsD 12-19-2007 06:57 PM

heavy metal testing?
 
Were you tested for heavy metals? (specifically arsenic and mercury)

How about B12?

Heat usually makes MS worse.

Only the feet....no where else?

horsebrokeranch 12-19-2007 07:02 PM

well my list is different but yes i had a spinal tap it came out great????? i had in the past two heart surgerys for wolf parkinsons white syndrome and it has been fixed i hope. the last surgery was in nov 2007 and the first in nov 2006. i have restless leg syndrome, cysts on my lower lumbar, little scoliosis, three minor bulging discs, sleep apthenia. i even have a unkown rash on my back and chest that has been there for now 4 months.


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