oh, i know you want to hear from others experiencing this...but just to let you know...it IS scary.FREAKED me out!!..and you reminded me that it happened alot while i was 'laying down' bed, or on the couch. ( i had thought maybe the way i was laying was cutting off cirrculation or something) it has seemed to have subsided for me right now and i haven't had an 'episode' since that last time i enquired about it, when it travelled all the way up both arms. my nurse did say there was a connection with the hep in some cases, but your wise to eliminate other causes as well.
good luck, hang in!
kimmy
I still have this and it is scary at times. Mostly when my hands are resting on my desk or by my sides when I lie down. I have not started tx but in the next two weeks I begin to fight the dragon. Who knows what causes what right now, I'm just happy to know I'm not the only one...Good luck to all...
This is the first I've heard of numb hands having anything to do with hep. Mine were like that a few years back but my doc. diagnosed it as Carpal tunnel and I would wear braces on both wrists at bed time. Anyway, as suddenly as it started it just went away, so really didn't give it any more thought. Are you sure we're not contributing every ache and pain to hep. instead of just the results of middle age????
My doc just called to order an MRI for numbness in my right hand. It feels cold all of the time. I have a long standing problem with my right shoulder. The nerve that innervates the trapezius is not working correctly and causing muscle atrophy, tingling, cold hand. I don't know if it's related to hepc, but suspect there could be a realtion between hep and nerve damage. I just heard the MRI will be on Jan 30, at 6AM! Fun, Fun! I'll keep you posted. caruu
It's pretty well documented. And who you calling middle aged?? ;-)
http://hepcvets.com/se/painful.html
http://www.hepcchallenge.org/manual/signs_symptoms_final.htm
http://millercenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/cryoglob.shtml
http://janis7hepc.com/Symptoms.htm
The doctors won't agree that any of your symptoms are hepc related unless it's been put through studies and written up in the medical journals. I used to go on wilderness expeditions with an MD who got severe headaches every time we went out, and didn't believe it was because he was going through caffeine withdrawal because it hadn't been written up in JAMA.
My GI, a very experienced hep c doc, also refused to relate my nightly numb hands with hep c. He said it HAD to be from how I was sleeping. Nevermind that I've had Reynaud's syndrome for 20 years..... Nope, it couldn't be related.
I've noticed in the past that when I increased excercise, the numb hands seemed to improve a little, but always come back. Now that I've cleared the virus, I still have the problem.
Best to you all.
I experienced numb hands at night originally in November 2002. That's what led to the diagnosis of hep C (blood tests). I was then put through the usual neurological tests (EMG, nerve conduction), with nothing abnormal seen. I mentioned cryoglobulinemia to the doc, but he didn't seem interested.
I was a genotype 2, finished pegintron/ribavirin treatment in mid-September, then had a flare-up of the hand numbness. This was very discouraging because I thought it may have signalled a relapse, but my 12-week post-treatment PCR was undetectable.
I'm very curious about this, and find it very interesting that so many hep C people have this.
Sorry to barge in here but, I have a question about a medication that my MD just prescibed to increase my HDL good cholesterol.
It's called (Niaspan) It specificaly says not to take this product if you have active liver decease. I'm not sure if I should consider my decease active or not ? I'm finished with tx and I'm undetectable so far! My liver Panel is fine ALT 33 and AST 37, I would like to keep these numbers where there at!
Any input on this GI PA?? or any one else.
Thanks and God bless,
Jamit_a
I recently did some research on this very issue because I've been having problems with tingling and numbness too (and it's not a side effect of treatment, because I'm not on treatment).
Anyway, you probably already know that it's called peripheral neuropathy, and it's often associated with cryoglobulinaemia, one of the extrahepatic conditions related to HCV.
Well, the good news is, there is some research that indicates that it's not always associated with cryoglobulinaemia. Check out this link:
http://ard.bmjjournals.com/cgi/content/abstract/60/3/290
Susan
This is a very patient dependent question. If you are found to have only mild-moderate disease (no cirrhosis)on biopsy and have been successfully treated, it is likely this medication will not be a problem. Your liver enzymes can be checked a few months after starting the meds to see if anything has changed. If you have more severe, less reversible disease (cirrhosis) these meds may be more of an issue.
If you were not biopsied and your nubmers all look perfect now, it is unlikey these meds will be a problem.
Talk to your doctor about your particular case, but it prob wont be a big deal.
GI.PA
Thanks for your prompt response. I did have a biops and it showed mild fibrosis, I don't know much about the pathology of the diagnosis. i.e portal bridging, etc. etc.
But the meds seemed to have work for me so far!
Male 38
Geno type 2
VL 6,000,000
biops mild fibrosis stage 1 or 2
Completed 24 weeks of pegasys , copegus.
cleared after 12 and 24
possible cause Tattoo. No IV drug use.
Thanks again for your input.
God bless
Marcello
Jamit_a
I recently woke up from my after-lunch nap -- with numb hands.
TB: The article you gave had links to others that cited it. One of them had something interesting to me because of the issue of infection of nerves by hep C. I know that the conclusion of the study doesn't show that it never happens (other studies show that it does), but it's reassuring to know that it didn't in this one.
MC = mixed cryoglobulinemia
DPN = distal axonal polyneuropathy
http://www.neurology.org/cgi/content/abstract/60/5/808
Conclusion: Painful DPN associated with MC and neuromuscular vasculitis is the most frequent type of HCV neuropathy. The usual detection of MC and the lack of local HCV replication indicate that HCV neuropathy results from virus-triggered immune-mediated mechanisms rather than direct nerve infection and in situ replication.
Hey Marcello: Our stats are similar..I haven't staretd treatment yet, but I hope I have a similar response! Congrats!
So what's the bottom line one this in your opinion? Is the numbness and tingling just a mild (or not-so-mild) nuisance that we have to put up with? Or is it something more sinister that potentially involves permanent damage to the nerves?
Susan
Hi,
I wish you all the best and once you start your therapy don't stop! just keep on fighting the dragon!!!
God bless,
Jamit_a
re: numb or tingling hands...i don't think this has anything to do with treatment,moreover the hepatitis itself, as i have experienced it on and off for several years. i think though that it is hep related. haven't read any studies at all, although i see there are several that have been posted, but judging from the many people describing this symptom, all with hep c it makes one wonder....and wonder and wonder....what else is related to this charming virus! if it is any consellation, this has seemed to have stopped for the time being for me though.
I don't know what to think. The neurologist's lack of concern (he told me it was nothing that would have a big impact on my life) was somewhat reassuring, but I'm still bothered by it. I've gone several routes in investigating and making guesses. At first I freaked out, after my first searches, thinking it might be a spinal infection (I had recently had a vasectomy, and read that that could cause infections that travel to the spine). For a while I thought it might be thoracic outlet syndrome, but the symmetry (both hands nearly equally) of it makes that unlikely. I've tried to increase my intake of magnesium after reading about its role in neurological function. I read someone's post a few months ago (Travisb?) who recommended grape seed extract. I'm considering asking doctor if she thinks an endocrinologist might be of some help in tracking down the cause. That article you provided was interesting, and now I think: "Oh no, I've got lymphoid infiltrates -- I wonder what that's from".
Anyway, this has all gone on for more than a year, and it seems like I've done a lot of flailing about, but I've settled down a bit and I've grown somewhat accustomed to it,although I'll never adapt totally -- especially since it messes up sleep. It waned a lot during tx, and that's why I thought the recurrence was a relapse sign. My interest was piqued after seeing so many people on the forum with it, and I find it strange that something with such frequency doesn't seem familiar to neurologists. And I also worry a bit about permanent nerve damage and progression. Sorry, but I'm still clueless.
Thanks for your information and opinions. I wish there were easy answers to this. It's indeed frustrating when GI's seem to discount the numbness/tingling symptoms. I'm so worried that I'll have permanent nerve damage. I feel helpless (an increasingly common feeling these days). My only solace is in knowing that I'm not the only person who is having these sypmtoms. I know I'd be a lot more concerned if I was alone in this experience.
Best wishes to you both...
Susan
PhilaGuy, HI! Funny you should post this. I went to my GP a wk ago Tues. I was so concerned....my palms were blood red, and I too am having tingling and numbness in hands. My hands look like I've been in chemicals....NOT!!!!! So his only thought was the meds leaving my body?????? So I still don't know, I called my liver doc 1st and the mean nurse said to go to see my GP. The numbness sometimes goes up both of my arms as well. I thought I had relaped. I finished 48wks tx. Nov 6th, was SVR the whole time, geno 1a, 48yr old female. So go figure. I didn't go to ask jeeves for red palms....some say it is hep c related. I am sooooo confussed, I'm just dealing w/ it!!!!! If ya hear anything let us know. Best Wishes on tx. We're here for ya! Cindee
Markley, Welcome aboard! You fight that nasty 'ole dragon with all you have in ya!!!! We've slayed so many dragons in here!!!! Take care and drink LOTS of WATER!!!!!!! Prayers to all, Cindee
I was soooo glad to hear that I'm not the only one with this problem. My hands and arms even go numb when I'm on the phone too long! I haven't started treatment yet so I blame it on the disease.
One more on this topic...when does the numbness occur for most of you? When I told my doctor about it, he asked me this question and it ONLY happens to me at night (many times last night, as a matter of fact). He said that the majority of his patients with HepC/Cryoglobulinemia-related numbness, it occurs throughout the waking hours.
My hands are tingling right now and it's only 10 a.m. My pinkies on both hands are nearly constantly numb. But all this is definitely worse at night. And, of course, that's when we all tend to feel more vulerable anyway, so it's much scarier.
Susan
Yeah, that is so weird. I know I'm more freaked out by it at night than I would be in the daytime. I know numb hands at night is a classic Carpal-Tunnel symptom, but I know it's related to HepC, as well. This also happens to a lesser degree to my mom and brother, who do not have HepC, so maybe I'm placing the casue where it doesn't belong. I guess I'll wait to hear from my doc with results of my Cryo tests and go from there...
Oh, the numb hands. I noticed that just a few week after starting treatment meds my hands would go numb at all times of the day and especially at night when I was sleeping. I brought this to my GI's attention. He said that he really didn't know a cause for this from the HepC meds, and we even suspected that it could be from my AD, Amitriptyline.
I had this problem for about 4 months, off and on. I don't experience the numbness like I use to, just very seldom now.
I wrote on this board several times about numbness and got response from others that were experiencing this.
Is it the hepC itself, the hepC treatment drugs or something else that causes this?