Numbness & Tingling... new

[LilyPony]

This site has been such a blessing and you're all full of such great info and insight. I really appreciate it! And, yes, I'm hoping to be in at JH within a month.

Still on the 30 mg pred and have basically stabilized where I am. Body aches, sinuses ache, constantly need to wipe my nose that's not a full-fledged bleed but weeping pinkish-red fluid, and gobs of goo with the neti pot each day.

Yesterday, one hand and 2 fingers "fell asleep". I'd been working on the computer and figured I had my hand set funny while working. Only it didn't get better. Just kept the electric tingle of a fallen asleep body part. An hour later when I went to bed, the tingling had stopped but the palm side of outer two fingers and palm itself were nearly numb. Figured it would resolve by morning but the same, plus the outer two fingers on the other hand are almost as numb. Mid-morning, the inner of my arm from armpit to elbow begins tingling and is becoming numb. Little while ago I have a warming sensation starting on the other arm same spot and random single pinprick feelings in my feet.

Call into the rheum who said to go through GP to get into a neurologist so am waiting for that referral to come in. No telling when that will be.

Anyone experience ANYTHING remotely like this? I can't help but feel this is a vasculitis type thing. Google is full of horrible things it could be, trying to listen to the voices of reason not the little irrational pred monster on my shoulder.

thanks in advance!

[Chris G]

I've not experience it myself, but it sounds like Peripheral Neuropathy, which can be caused by WG. Dont panic. Hopefully others will chime in with more info on this for you. But, perhaps the neurologist can get you into the folks at JH sooner, with these new symptoms developing.

[JanW]

Agree with Chris. I haven't had this myself but a few here have and I'm sure they will come along to confirm.

[drz]

This site has been such a blessing and you're all full of such great info and insight. I really appreciate it! And, yes, I'm hoping to be in at JH within a month.

Still on the 30 mg pred and have basically stabilized where I am. Body aches, sinuses ache, constantly need to wipe my nose that's not a full-fledged bleed but weeping pinkish-red fluid, and gobs of goo with the neti pot each day.

Yesterday, one hand and 2 fingers "fell asleep". I'd been working on the computer and figured I had my hand set funny while working. Only it didn't get better. Just kept the electric tingle of a fallen asleep body part. An hour later when I went to bed, the tingling had stopped but the palm side of outer two fingers and palm itself were nearly numb. Figured it would resolve by morning but the same, plus the outer two fingers on the other hand are almost as numb. Mid-morning, the inner of my arm from armpit to elbow begins tingling and is becoming numb. Little while ago I have a warming sensation starting on the other arm same spot and random single pinprick feelings in my feet.

Call into the rheum who said to go through GP to get into a neurologist so am waiting for that referral to come in. No telling when that will be.

Anyone experience ANYTHING remotely like this? I can't help but feel this is a vasculitis type thing. Google is full of horrible things it could be, trying to listen to the voices of reason not the little irrational pred monster on my shoulder.

thanks in advance!

Did this improve after awhile. I have had neuropathy problems for many years but it hasn't generally moved as quick as you describe. Mine has been more gradual and ebbs and wanes over time. Some times an area will "fall asleep" but generally it will recover after awhile.

[LilyPony]

Did this improve after awhile.

It's weird. My arms are fine now, pinky and ring fingers on both hands plus both palms are totally numb, soles of feet are tingly and numbing, electric sensations down back of legs. I'm getting really concerned but maybe I just watch too much House! I've already got a message left with the GP that I need the neuro referral processed so I can get in to see somebody hopefully soon.

Thanks all, it really does sound like Peripheral Neuropathy. At least it's something that's associated with current stuff, not a new disease I've managed to label myself with. Been a little too good at adding diagnosis codes lately.

[jeniban]

i too have had numbness in fingers. Dr said it is peripheral neuropathy. It gets better slowly when WG in under control. but gets worst whenever i start to flare. Also i have neuropathy in both feet which happen just before i was diagnosed.It has not resolved yet.

[RCOSSIO]

At 30mg of pred that can be one of the side effects...when I was first diagnosed, I had similar feelings and yes it did go away when i dropped my pred...

[Sangye]

Peripheral neuropathy means a single peripheral nerve is affected. For example, the "funny bone" is actually the ulnar nerve. If it becomes entrapped, injured or affected by vasculitis, you'd get a particular pattern of sensory change (eg, numbness, tingling). Here's a picture of what that would look like. It would affect only part of the palm, not the entire palm as you described. Also, it would not occur bilaterally and certainly wouldn't give you symptoms in the legs.

Those symptoms are concerning. They suggest something happening higher up in the central nervous system, at the level of the spinal cord or brain. My recommendation is that you push to see a neurologist sooner. If you have to wait, at least get into your GP and have him/her assess and document what's happening. Meanwhile, make a drawing to indicate exactly what sensations you're having and exactly where. As we know, symptoms come and go and it can be difficult to remember them. With any neuro symptoms it's important to be precise. There's a big difference between numbness of half of the palm vs the entire palm.

You can develop peripheral neuropathy in multiple nerves but it doesn't occur all at once.

[RCOSSIO]

Sangye good point...but I had a similar experience when I asked my Rheumy he mentioned that at a high level of pred..those conditions are exacerbated. I haven't had similar symptoms since dropping pred.

Thoughts?

[Elena]

I had peripheral neuropathy, and my little finger and half of my ring finger became numb and hurt a lot. Just as the picture on the site Sangye linked to. It was the only thing that did not get better immediately when they started me on solu-medrol and ctx. My hand became gradually better over the next 6-12 months though, and it's completely fine now. But since I almost didn't use it for 1-2 months I lost a LOT of muscles in my hand and and I can't straighten it out completely. It's not noticable anymore though, except I'm a little weaker in that hand.

It was only one nerve, the ulnar nerve, that was damaged though. Not like you experience with several nerves at once.