neuropathy

[cport]

I have lost the sensation of touch in my feet and legs upto my knees and am also having pins and needles sensation in my thighs at night. Been put on amitriptyline to see if that helps. What i'm worrying about is what will happen if i loose all feeling in my legs. Is there anyone on here that has aids to walk because of this problem or even ended up in a wheelchair or can it all be controlled and the neuropathy halted.
I'm sorry if this seems a daft question but it seems to be something i'm worrying about quiet a lot .

Claire xxx

[navydad]

I will add my two cents in later,,, but I know what your going through,, I really do,, its horrible and I feel for you,, it has to be one of the most horrific things to have,, some kind of neuropathy,,, I have the Small fiber type,, its maddening,, most here who have it have adjusted to it,,, its still  driving me insane,, cant feel hot or cold,, cold feels like its burning,, put gloves on to get anything out of the frig,, legs that dont feel that good,, like they want to give out,, sitting in ffront of a electric heaater on a 70 degree day,,, well loooks like I added my two cesnts,, but my case manager,, God bless her ignorant stupid soul,, asked if i was ina  wheelchair yet,, aaaaah,, no,, not yet,, but thanks for asking you domb a&&,,,, what the heck do these people actually do,, case manager?,,

[cport]

It's just all so scary isn't it. Everytime i mention Sjogren's to people...i work in a hospital....they say oh yes thats dry eyes and mouth isn't it ....i want to scream at them as NO that is not all it is,not for quite alot of us anyway. I don't want to think about things like wheelchairs yet but i have two young children and if it's going to be a possibility i need to start thinking about what i'm going to do and what money i'm going to need to save etc.
I'm sorry you're going through so much,Sjogren's really has a lot to answer for doesn't it.
Claire xxx

[Jules48cats]

Hi Cport
So far I only have it in my right leg.  But if I walk for more than 20 or 30 minutes.  I get a screaming pain from the hip down to my foot.  On a scale of 1 to 10, it gets up to a 15 or 20.  If I could produce tears I would probably cry. 
I hated the fact that I could not attend events with my husband or if I did, I would have to find a place to sit  while he went on his own. 
This spring our daughter in law broke her ankle and because she is a teacher at a local college, she couldn't just not work.  So my husband bought her a wheel chair.  Nothing fancy of course, under two hundred dollars.  Now when we go places , to fairs and things I have a wheel chair to ride around in, and it is much better.   I have spinal stenosis and degenerative arthritis in the spine so I know I am headed that way anyway.  But I do try to walk as much as possible because I don't want to lose what I have. 
Jules

[inga]

Plain and simple answer....yes.  There are forums on PN in which you can find a lot of info on the effects of PN.  First tho, are they going to do a skin biopsy to make sure that is it?

[SLEEPY101]

Just like Jules, I only use a wheel chair for places like Disneyland,the zoo etc.

@cport
  I worry how my walking and movement will be when I get older. I am 33 now. And in the last two years my health and active lifesytle and gone downhill.

The nerve pain one my first symptom that something was wrong. Yet to get diagnosed with a Neurpathy problem. I only had a nerve conduction test when I know will show up negative it Small Fiber nueropathy. My pain Dr suggested neuropathy recently because of limited response to the pin prick test but he didn't order any more tests.

Neurotin helps with the numbness and pins and needles feeling. Ice helps the burning some, and tiger balm helps some. Also the perscrition Lidoderm patch brings some relief.