Could this be …

I don’t have have CIDP but I will sometimes get that same feeling. I never looked into because it doesn’t last long. I just told myself it was from the way that I was sitting & a nerve somewhere was being pinched.

Because you have CIDP it might be a new symptom & something that you should bring up to your dr.

Good luck,
Kelly

Charles,

Ask your neuro the next time you see him. Rememebr also that that area is not served by a lot of nerves anyway. MOst people have poor sensory feelings back there. The fact that it comes and goes is interesting. It could be a pinch in the cervical nerves that feed the area. a pinched nerve in the neck could produce numbness radiating out. Does your numbness follow any particular activity or positioning? My hands go numb if I hold the phone to my ear too long, or if I try to paint with a paintbrush too long. I know it is an issue with my neck.

A neuro can pick it out pretty quickly. Ask him when you visit.

Good Luck
Dick S

Charles,
Yes, I get that stinging/tingling on my left shoulder front and back – it feels very creepy. I believe mine is primarily caused by a pinched nerve in my left shoulder, that happened because my muscles were very weak and that shoulder popped out of the joint about a hundred times (no exaggeration, it was ultra-floppy). The nerve is still pinched but not as inflammed thanks to the IVIg. I still get those nasty nerve pain thingies but it doesn’t wake me up at night anymore. At some point we’ll fix the darn thing but all things considered it might be awhile.

The only thing I would caution is to make sure your heart is OK before writing off the sensations – it’s tough to tell sometimes what is weird nerve pain and what might be something more serious. Sometimes the nerve pain in my left chest is so strong it feels like a heart attack but we’ve done enough tests that I’m comfortable my heart is in good shape and it’s just nerve pain.

Good luck,

Julie

Charles –

Don’t sweat the LP. Emily has had 3 of them & was wide awake for the last one. The previous 2 were done under sedation. Her last one was when she was 5. She screams bloody murder if she pricks her finger & sees a pin point of blood & she did just fine during the LP. She was mostly upset from the numbing shot & because we were holding her down while she was on her side, to prevent her from hurting herself.

They will have you lay down on your stomach, possibly on an x-ray table. The LP area will be cleaned with iodine. Then they will give you a shot of Lidocaine to numb the area. That is the worst the pain gets, I swear! Then they will insert the LP needle & thread a catheter through it. If you are on an x-ray table then they will take an x-ray to make sure that they are in the correct area. Then they’ll have you turn to your side to let the spinal fluid drain out of the catheter.

The whole thing will take MAYBE 5 minutes.

After the LP they will want you to lay down for awhile. Once they let you come home they will want you to lay down for about 24 hours, I think. This is to make sure that the whole closes up & you don’t leak out any spinal fluid. There is a chance of getting a severe headache too. So make sure to follow ALL of the rules they give you.

Good luck,
Kelly

Greetings, Charles.

Regarding numbness, I’m essentially numb or tingling over most of my body–ear canals, tongue, back, arms, legs–you name it. At times it’ll get worse in particular places depending on what position I’m in or how I’m holding my arms, etc.

Regarding the LP, although some people have problems–primarily headaches–if you drink plenty of fluids before and after and lie flat for a couple of hours after it’s done you should be fine. I’ve had two with no problems. They usually deaden the area before they insert the needle, so you really don’t feel anything. The hardest part of it for me was lying in the fetal position for half an hour waiting for enough of the CSF to drip into the tube.

Best wishes in the battle,

Deb
London

My neuro suggested lots of coffee afterwards to help close up the hole – it was contrary to my logical thinking but I did find some supporting articles on the web. Other than that lots of fluids, lots.

Also – don’t do what I did – I had a two hour drive back from the lumbar puncture, don’t just jump in the car and head out – take an hour or two to stay lying down if you have a long drive. Then, don’t get up at the crack of dawn the next day and drive down to spend a long weekend in the mountains because the hole will NOT close up due to the extra pressure in the mountains. HOW FUN THAT WAS!!! (not)

Other than my stupidity the LP was a piece of cake – didn’t feel a thing and didn’t even get nervous when the student walked in and said “this is my second LP and the first one didn’t go very well.” 😮

Julie