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!!!!:)

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

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.

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).

Hi. Welcome to our little group.

I assume you have had a lumbar puncture.

what did it reveal?.

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?

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?

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?

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?

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.

yes they have done all, and no i have not been out of the country.

yes i have been checked for b12 and was still put on it along with a slurr of vitamins for at least 6 months and nothing even at the slightest got better. i have it in my hands and if you apply pressure to any nerve on my body it hurts. i have at times lost 3/4 vision in my left eye that lasted anywher from 20 min. to 1 1/2 hours. i have had memory and speech problems that come and go. walking is hard enough but i get a like drunk walk that comes and goes. shaking, twitching muscle weakness all over, back neck and arm pains. charlie horses all over cramping all over. my fingers lock up when i do small tasks all like i said come and go by themselves or together.

crazy question, but does anyone know of the best or great nuerologists that deal with unknown nueropathy?

HI Horsebrokeranch and welcome!
This is a great group that you have found! They know SO much about Neuropathy!
I hope you find a good dr. who helps you figure out your problem or at least gets you on the right medication.
I have small fiber idiopathic neuropathy also and mine came on over a few months the beginning of this year. I take Lyrica 75mg three times during the day and at night I take one 75mg and one 50mg and that gets me thru the night.
Good luck to you! I wish you happy Holidays!

I am sure you are very frustrated. All you can do is start wading thru some of this info...This is the best place to start. It is a lot of info, very intimidating, but, it is not unusual that many of us have brought up tests and possibilities to our docs....(and we sometimes come up empty handed) I can assure you, there is an end of the internet on some diseases....I have reached it. There is a point when you get to all that current medical science has to offer...as of today. It changes every day as new discoveries are made.

http://www.neuro.wustl.edu/neuromuscular/naltbrain.html

http://www.neuro.wustl.edu/neuromusc...yaltbrain.html

http://www.neuro.wustl.edu/neuromuscular/maltbrain.html

http://www.neuro.wustl.edu/neuromuscular/synmg.html

http://www.neuro.wustl.edu/neuromusc...ia/aindex.html

http://www.neuro.wustl.edu/neuromusc...labdis.html#Ab

http://www.neuro.wustl.edu/neuromusc...r/resource.htm

If I were you, I would be asking for some relief from that pain, no matter what the cause turns out to be. I use a fentanyl patch and take Lyrica. My feeling is...why suffer? Pain just leads to more pain. I think that suffering prolonged pain makes the body weaken and worsen. There is nothing to be gained by suffering. These medications do not eliminate my pain, but they dull it enough that I can enjoy some things in life. Have your doctors discussed pain management with you?

I totally agree with you Susan! I hate pain and will do what ever I can to relieve it! The worst part for me is that so much of the pain meds make my bladder hurt because of my interstatial cystitis! It's the pits!
There's some great Pain Management dr.s out there who will help with severe pain, I suggest you find one and start trying some meds and see what works for you.

There are a number of tertiary centers--
 

--that are involved in the research of neuropathy--Jacksonville Shands in Florida, the Cornell-Weill Center for Peripheral Neuropathy in NYC, the Jack Miller Center in Chicago, Massachusetts General, Johns Hopkins in Baltimore, the Mayo Clinics (Rochester Minnesota, Arizona, Jacksonville)--all depends on where you live, how far you'd be willing to travel . . .

It does seem, by what you've been revealing in the posts, that you have a lot going on. From what I've read about Wolf Parkinson's, that may certainly be related to genetically abnormal nerve pathways.

Could you sort of give us a timeline as to when the various conditions showed up, how they manifested, etc.? How and when did your neuropathic symptoms come on, and how was it determined that it was small fiber (were autonomic, quantitative testing, skin biopsies done)?

what vitamins?
 

If you were given cyano-version of B12, you may be one of the very few who
cannot metabolize it. Those people develop an optic neuritis as a result.
(which you state you have had).

Use of activated natural B12 does not cause this problem.
Methylcobalamin is the name. You do not tell us specifics about what you took and how much.

Also many drugs cause nutrient depletions, and you must be on something for that cardiac issue?

When people have seen many doctors and NO results are forthcoming, then one needs to look at drug side effects, nutrients, and also the potential for foods to be causing this. Gluten is the most common, but other foods you may be intolerant of may cause issues too.

Optic neuritis is a serious symptom. It is trying to tell you something, IMO.

Cramping and twitching all over? This sounds like an electrolyte problem. Calcium/magnesium imbalance.

About 25% of small fiber neuropathy is deemed 'idiopathic'. The key is finding a doc who is willing to go to the end of the internet with you, and you still may end up with a diagnosis of idiopathic. I think you have tried a lot of the new drugs out there, but maybe some combination out there will give you relief.

I exhausted all possibilities, and we are looking at 'known' hereditary causes, which, do not fall into current neuropathies, but rather, myopathies and related syndromes. I am not exactly sure this will yield anything, but my doc did understand that I had to go there. I have some alarm bells sounding in the family history, not neuro ones, but other ones. A cardiac death, for example may be related to a neuro condition that was never diagnosed. I say 'known' because new ones are discovered all the time. It is a field in flux right now and genome research has blown things apart in terms of what is a myopathy, endocrinopathy or neuropathy.

I agree you need pain relief....however, some drugs are contraindicated in some conditions. You have seen 11 or 12 neuros so I suspect they have ruled out most of these conditions. If you are idiopathic, you have to live with it until hopefully a reason is found, so yes, do take what relieves your pain if you can find something that works without causing havoc. Some folks with some conditions react to some drugs. You will know what you can and can not take.

Your screen name indicates something to do with horses....I suspect you ride a horse. You have spinal injuries, that may through some process contribute to PN...a lot of us, me included, have spinal conditions. I have RLS as well, but had that my whole life....even as a kid. I have had anesthesia awareness, paradoxical reactions to many drugs, especially those that put most people to sleep for days. I am definitely wired differently, and I have to accept that.

I hope you can get to the bottom of it. The best neuro is the one who works with YOU.

Small Fiber neuropathy
 

Hi Horseman, I have had small fiber neuropathy diagnosed earlier this year. The pain is bad but what has helped has been the drug "lyrica" which is now approved for the treatment of fibromyalgia. It has reduced (but not eliminated) my neuropathy pain. I recently had a nerve biopsy which showed a remyelinating polyneuropathy which is probably the cause of the small fiber neuropathy. The MRIs also showed signs of brain damage and mentioned that it was compatible with MS. Mention lyrica to your neurologist or doctor as a possible aide to controlling the pain. It has worked well for me sicne I started on it some 4 months ago. Good Luck.

some neuropathies...
 

are temporary. You may be injured by something, and then need to heal.

Others are progressive like the autoimmune ones.

Some autoimmune ones are connected to food intolerances...like gluten.
Others are connected to viral insults.

Some are genetic..

Some are metabolic (low thyroid, and diabetes)

Some are connected to vitamin deficiencies. And may respond to Thiamine (B1) and/or methylcobalamin B12 and Folic acid

Some are due to a cancer that may be hidden somewhere in your body.
(paraneoplastic neuropathy)

Some may be due to chemotherapy for cancer using potent drugs.
AIDs drugs also cause neuropathy.

So some investigating may help you heal. And other investigations may just reveal causes, that cannot be treated.

Neuropathy is a confusing set of symptoms and one label/treatment does not fit all.

Good neurologist
 

Hi,

I assume you live in Arizona too, Horsebrokerance. Dr Sivakumar has an office at the Barrow and on 92st in Scottsdale. His Scottsdale number is 480 314 1007. He is an expert in PN and muscular disorders.

Did they scan your neck to rule our cervical spinal stenosis. You can get leg problems from the cord compression if the stenosis is severe enough. Did they ever do an EMG exam?

Good Luck

thank you everyone
 

yes it has been determined that something is attacking my auto immune system. i have had no trauma to any part of my body, and been tested for glucose, diabetes, aids ect.nothing wrong there. i am currently taking 800mg of nuerontin 4x a day along with cymbalta 2x a day. the nuerontin curved the pain and pain got worst, the increase of nuerontin. im maxed out on it. ive tried lyrica twice and it did nothing at all for me. my heart problems started on july 4th 2006, followed by my surgerys. my father has parkinsons disease and he is the only other person known in my family with nuerological disorder. my heart is a genetic thing that runs on my mothers side.

Can or did you tell us meds your on,i had to go to a Dr. earier and endied
up in hospital...So been there until 10 mins agoo. The reason for asking is the rash you mentioned..Talk to you later when I get some sleep.Welcome
Sue...

In a hurry, so please pardon me if this has already been addressed. Were you given at least 1000 mcg B12 daily? Not 1000%, but 1000 mcg.

rose