[darlindeb25]

I was just reading Silverlady's thread about her numb hand and thought I would add my numb knee, well, is it numb? Yesterday morning I had that cold draft feeling again. It's been along time since this has happened and at first, as I did last time, I just looked for where the draft was coming from. Then I realized, the draft was only in one spot on my left knee--no where else. It feels like a cool breeze blowing on that spot of my knee (lower inside of left knee), the sensation hits, then stops and my knee feels kind of numb. Neuropathy is so strange--always something new, isn't it?

[Silverlady]

Deb,
I don't actually experience the numbness most of the time. In fact it's just the opposite. My clothes hurt me, wrinkles in the sheets hurt me, elastic in my pants feels as if you are cutting me with a knife. I can run one foot over the other leg and it feels like it is numb where they touch. But at the same time. I can touch the same area with my hand and it isn't numb. You can add into the symptoms a feeling like you've stirred up static electricity and all the hair in the area seems to be standing up. It's only a feeling. It doesn't actually happen. A strange sensation. Then there is the electric shocks, tingling, and aching bone deep pain. Gotta not forget the feeling that you are freezing in that area also but at the same time burning. I think the worse part of it is the burning. Oh and while you are at it, throw in the sore joints from the RA and the dryness in my mouth, nose, throat, digestive tract and a lot of unmentionables. That pretty much describes the symptoms for me.

My neuropathy is pretty much body wide now. The worse part of the symptoms is from my toes to my waist and lately up the left side of my back. Both hands are affected but not as bad as the rest of my body.

The face has places on it that tingle and I believe my tongue has neuropathy in it. I also have not been able to eat liquid from a spoon in the last couple of weeks. My bottom lip is numb and I can't feel the spoon until the soup trickles down my chin. (really pretty sight) My scalp tingles awfully in one spot, left side on the top. All of this stuff is worse on the left side. When it started the left foot was always the worse and as it spread the left side is where I feel the pain most even tho the symptoms are on both sides.

My neuropathy is autoimmune, probably small-fiber caused by either the Rheumatoid Arthritis or Sjogrens Syndrome.

I think this is a good thread. It would be nice to see what other people experience as their symptoms. And maybe add what type of neuropathy they have been diagnosed with. Might help someone new see a comparison.
Hope I didn't bore all of you,
Billye

[darlindeb25]

Billye--do I ever resemble your remarks! I pretty much have much of those same feelings. Yet my neuropathy may be the opposite of yours, my whole body is involved, yet I think the worst is in my neck and shoulders. My neck has a fire going right now and my shoulders almost always have a pinched nerve feeling now. It sometimes radiates down my arm and into my wrist.

I too feel every wrinkle in the sheets, I can't stand collars touching me, can't stand necks in my tops anymore, am relieved to put my shorts on after a day in pants. The electric shocks, tingling, and aching bone pain--all very well known to me. My face is involved too, many days I feel like it is on fire, yet it isn't even red--I woke up with my tongue numb and stinging at the same time on the very tip--that was a new sensation to me.

My neuropathy is autoimmune too, I have celiacs disease, an autoimmune disease which causes severe malabsorption of vitamins and minerals--I have a B12 deficiency. My intolerances are becoming so many, that I now realize I am back to not getting enough of the correct nourishment.

We just must keep fighting it--don't let it get us down.

[BEGLET]

Body-wide PN is a strange thing....

Mine is beileved to be auto-immune also - sudden onset following some type of respiratory infection (so sounds like CIPD) - as I've gotten some energy from IVIG - although extensive auto-immune testing has not shown as such (everything from all the ANA - SSA - bipsises - LP - MRIs - etc....)....... mine however is not so much painful as both of yours - which sounds awful - the numbness I'm very aware of is in my legs and feet all the time (tingling, etc) - but I dont even realize how involved my abdomen, arms, etc, until I get cut and am bleeding and didnt feel it. Yes, my lips and tongue get numb and thats noticieabe - although it appears the numbess goes thru my guts as I've had to live only on liquids since onset (6 years ago)....
Sural nerve biopsy shows almost a complete loss of large mylinated fibers, disporprtionate loss of small, and then about equal loss of un-mylinated fibers, large and small, and axon degeneration..... also, the NCS/EMGS show complete loss of sensory nerve conduction in all extremities......

Thoughts? - can auto-immune PN affect either predominately large or small fibers?? And, does that make a difference in the type of pain we experience? (from what I read on the site - small fiber causes more pain -large fiber more loss of sensation - loss of balance)

The kind of pain you are describing with the shooting electricla shocks I get around my sural nerve scar - not sure why...... (that nerve is gone right? and has been for five years)

My doctors are revisiting the para-neoplastic aspect next month - surgery recently revealed a progressive cardio-myopathy (again, for no reason) - that is sometimes seen in amyloidosis, and in fact I had a positive biopsy for it a few years ago but they couldnt confirm yea or no (with the progressive heart failure its a strong suspicion again)..... we now have a specialist in So Cal that knows this disease well, and I'm seelnig him and the cardiolgoist he teams with very soon.....

It IS always something- I think part of the trick is both respect your body when it says it needs rest and at the same time - doing the best you can every day