Hi! I saw my new internist yesterday to give him some background on my diagnosis and to get his thoughts. I told him my ANCA is now normal, yet I still have the symptoms of vasculitic neuropathy...painful nerves all along my left side, from my face to my feet and still have some numbness and tingling. He said it will take about 6 months for the damaged nerves to regenerate. My RD said something similar but I know sometimes they don't regenerate at all. Do you have nerve damage experience? Have any of your nerves regenerated or repaired themselves after your disease was considered under control? Or did they stay the same? Any voices of experience out there? Thanks.
I had a lot of neuropathy when first diagnosed. Both hands and one foot. Go figure. The neuro I saw said it can take up to 6 months for the neuro effects to go away. He gave the example of when you have a serious cut and it heal...but you keep rubbing it for months later until the feeling comes back.
My right hand was the longest healing but it's OK now. No residual effects.
Pip
Glad to hear it, Pip. Six months seems to be the magic number. How long did it take for your hand to heal?
I hope others have equally encouraging reports.
The only nerve damage I have ever suffered is in my face from jaw surgery. I couldn't close my left eye or blink right. Or raise my eyebrow. You know how hard that makes for plucking eyebrows. lol
But a couple months later I got this horrible pain like someone stabbed me in the side of the head by my eye with an ice pick. I screamed. Then the pain was gone and everything was working. Real weird. But I knew the chance of nerve damage just prayed for the best.
Good luck to you.
Ouch, Robin! Glad for the good end result but that's getting it the hard way. So far that's two with good endings.
Thanks for your response.
I had severe sciatica prior to a decompression of L5/S1. After surgery the nerve pain was less and continued to improve over about a year's time and then stabilized. It's never completely gone away and I didn't expect it to. I'm just happy that it's 75% better!!! LindyThe right hand was 5 or 6 months. The rest came on later and left sooner. Does that make sense?
Pip
Thanks, Lindy. So if I don't have a good result within 6 months, it's good to know it's still possible for more improvement. I was a bit worried because I never did get the feeling in my right thigh back after my two preganancies. Apparently my babies were pressing on some nerves and did permanent damage. I'm hoping this RA nerve damage will turn out better. I hate the way my face feels, like I've been squinting with my left eye for an hour straight so that the muscles are tense and tired.
What I don't understand is, why the neuroapathy still comes and goes instead of staying the same until it improves permanently. Is it normal for the nerves to still be unstable if the disease is under control? Anybody?
Pip, that's interesting that what came on later, left sooner. It makes me think that the later nerves weren't damaged as much so they healed faster. Yep, that makes sense to me! Jesse, there's still the chance that the nerve (probably sciatic) damage from pregnany will still get better. Nerves can regenerate years later. My neuropathy in my legs comes and goes, so does the sciatica. Last night they both hit me, along with RA pain in my legs. We had a bad storm and I could walk to the kitchen to take my meds. This morning I'm fine, go figure. I've given up on trying to figure it all out. There's no rhyme or reason. LindyJesse, both my surgeries in 2002 resulted in nerve damage. The hysterectomy scar came back with the stabbing (already mentioned), although there are bits of it that are still numb. The back problems which had caused the right outerside of the lower leg to be numb (and I was told that the feeling would never come back), well it did come back about 12 months after the surgery... fingers crossed that it all comes back for you.
On AP they say that the disease 'unwinds' in the sense that many people can feel the various systems that were hit reverse in the order it was hit. For example - my 3 month herx scared me to death - my hand blew up like Felix the Cat's glove. I mean huge! I was terrified and it was over a Holiday weekend so not a lot of people posting on the RB and my hubby was out of town. It didn't hurt but it was UGLY. It took me a while to realize 1) it was my right hand - the one with the most neuropathy and 2) it was not both sides of my body. I was PRA but had gone on to symetrical 'attacks' for want of a better term.
To me, this fits in with Jesse's thoughts. I had a lot more compression of nerves going on in my right hand, I'm right handed, I write with my right hand etc. The inflammation from nerve damage in my body seems to have been mostly concentrated in that place.
Does this make sense?
Jesse -
Maybe it's not under control. Not trying to be a downer - but we've seen posts where peoples numbers are 'in line' but they're flaring. That flaring has to be inflammation that the tests just aren't picking up. That might also explain how some people can still get erosions when they are 'in remission'.
I have a real problem with the term 'remission'.
Pip
Hmm, so it's possible this will continue to come and go, or....I might get complete recovery, or......the disease may not even be under control. I'm beginning to see why some of you just give up trying to make sense of it all. I guess I'm still trying because I haven't been at this very long and it makes me absolutely nuts to not have answers. Some day I'll have to just give it up, I guess. In the meantime, it's good to hear the experiences of others. At least that gives me a "window" of what the possibilities are.
Shoot, I'll have to get the "true" answer for you, but I think it was something about a nerve will regenerate 1/4 inch a month? So it depends where the damage is and how long the nerve is, etc.
The small fiber sensory nerves in my hands and feet are dead/dying and I have lots of nerve pain. Pamelor has helped a lot with the nerve pain. I have had some of the feeling return in my hands but not my feet or legs. My neuro said I will never get those back. I have an abdominal nerve damaged years ago during surgery that never healed either. Sorry, wish I could tell you they come back. I suspect it has to do with the type of nerve damaged and the nature of the damage so you may be totally different.
Laker
Thanks, Debra, any information you find will be very much appreciated.
Laker, I know you're right about some nerve damage never recuperating because the nerves in my right thigh that were damaged during two pregnancies never regenerated, and that was 30 years ago. I'm just hoping this new nerve stuff was caught in time.
Lorster, I really feel for you. It must be awful to have no sensation in the breast area. I hope you end up with a good result when the six months are up. My fingers are crossed for you.
It's been very enlightening to learn how many of you have nerve issues related to RA. I had no idea it was such a critical issue. I thought RA type diseases mostly involved the joints and muscles, so my nerve issues seemed to be very odd. I guess not. Thanks for making me feel that I'm not alone in this. Misery loves company, as they say, although I certainly don't wish this on anybody.