a request for helpful advice

[One Eye]

since modern western medical science is of no help... I have seen many doctors over the years. each saying the same thing.. I stopped listening a long time ago I was hoping that perhaps some one here would be able to suggest something.

I suffer from a degenerative nerve disorder. I am gradually loosing all feelign through out my body... autonomic nerve function is unaffected.. *crossing my figners* so far and from what the doctors have said it should not. but.. sense of touch preasure.. heat and cold is in some areas of my body is completely gone. and in the rest it is reduced 60 to 90 percent. was not so bad when I used to be a brawler but now..

it feels like I am wearing a suit of wet leather.. and while i can see my hands moving and make them go where I want them to .. it is as if they belong to some one else. that being the nearest way I can think to describe it.. I am not askign for sympathy or anythign like that... just suggestions on what might help if not improve my condition then at least slow the progression down.

when I have to conciously think about how much preasure I exert when even holding my wifes hand so I don't crush it.. *ss* it's not a fun way to live folks..

I'm asking for her safety as much as for my own


thank you.

[Mysta]

let me see what i can find, hun, and my best friend is a doctor, and her mother is as well*hugs*
I have a friend who has something quite akin to what youre describing as well.... i may need more info, but will check with her in the am as far as what youre describing*hugs hugs* tis always a good thing to be educated, and informed, i will see what i can do!
*puts on my superwoman cape and flies to do some work, then to bug my friend*

[Sahara]

Have You tried a natruopathic doc, Bro?  Even being a pre-med student, I back naturopaths all the way. As a matter of fact, when I get through DO school, I'd like to become a naturopath as well.  They use approaches that western medicine doesn't belive in, but they work.  I've seen it.  And the best part is it's natural, which leaves less chance of a reaction to medication, just make sure you tell them your allergies up front.

Hope it helps, Brother. *sends hugs*

Kendra
AKA Sahara

[One Eye]

well luckily i have no alergies..   at least none i have ever found...  and well..  where i am livin now...  the selection of doctors is  low... anyhting that is not main stream...  is not available..  and even the main stream..  is dated..  probably 5 years at the most current level..  I will see what I can find up here.. but i am not crossing my fingers..

 and Serenity.    for a little more information.. the last tiem i had anythgin looked into.. my doctor sent me to a  specialist..  ran a nerve conductivity  test..  for those that don't know they stick needles in you then run a current into them.. and judge the  amount of voltage lost..   my limbs..  aperently the nerves are still there and in tact..  even the nerves in my  other apendage are stil there... but it  gets lost  at some point because it sure aint registering in the back of my  brain..   

you know you'd think the doctor would figure out somethgi naint right wne he jabs a needl in the end of my penis and I don't flinch.


toodles  off to work I go

[Taryn]

it almost sounds like you have RSDS, I will look into it more and talk to a friend who has it... and I will send you the info she sends back to me, to help you if it is, or what it could be... ~smiles~

[Mysta]

*bangs my head on the wall cause ive been working all day  this far too* I have a friend who  has much of what youre describing, but he has alot of pain associated with it as well, so doesnt sound quite alike, will check! Taryns idea sounds the closest from what i have heard!

[~Dylan~]

My best suggestion is make sure you are eating right, and are keeping in good bodily shape.  Lots of fresh fruit, and veggies...Lots of sex, keeps the immune system up, you know the normal things...

[One Eye]

*grumbles*  pain...  well lets see.. I have  the fairly regular business of gettign old galss and  metal removed from my back.. chest..  which muse helps me with... now she can touch one area.. and I will jump through the roof.. not  because it is overly painful.. but because  that area still has feeling  it is  far more sensetive seemign because the skin around it  has no sensation..  and  hrmm I do eat rather healthily..   don't do the junk food binges any more..  as far as sex..  mmm   well as they say a condom  desesetizes you..  well   it's like i am constantly wearing one.. good in some aspects.. but SUCKS otherwise.

 what was that about RSDS?   don't recall hearign abotu that

[DaPaleOne]

http://www.rsds.org/

thats the RSDS site that gives ya a shit load of info on the syndrome

also have they had you checked for -
herpes varicella-zoster (shingles)
Epstein-Barr virus
cytomegalovirus (CMV)
herpes simplex

any of these can cause peripheral neuropathy causing nerves to misfire and/or no longer work properly within the routes along the appendages...I have shingles which causes misfiring of nerves and roaming numbness and a few permanent numb spots although the nerve induction tests said my nerves were fine..the infections in the nerves will overtime cause severe damage and begin limiting mobility and functionof the limbs even with a working test.

Viral and bacterial infections can also cause indirect nerve damage by provoking conditions referred to as autoimmune disorders, in which specialized cells and antibodies of the immune system attack the body's own tissues..have they checked you for these as well..-
Guillain-Barré syndrome (acute inflammatory demyelinating neuropathy) can damage motor, sensory, and autonomic nerve fibers. Most people recover from this syndrome although severe cases can be life threatening.

Chronic inflammatory demyelinating polyneuropathy (CIDP) is generally less dangerous, usually damages sensory and motor nerves, leaving autonomic nerves intact.

Multifocal motor neuropathy is a form of inflammatory neuropathy that affects motor nerves exclusively; it may be chronic or acute

trust Me when I say..if you have any form of insurance..milk it for all its worth even if you have to take a trip out of the county parish borough or whatever it is you people live in..lol..and see another doctor who knows what the hell they are talking about..it took me seven doctors toget the nerve trouble i was having diagonsed properly...and i can still not feel half of My right leg on the outside cause it took them so long to catch it...fight for the right to see and talk to any damn doctor you want..and get the shit taken care of Brother Man..I mean it