Hey Everyone: I've been recently diagnosed, type 2b, high viral load, probably had for 20 years. I became symptomatic late last year which led me to see my physician. I've recently seen a hepatologist and will probably start treatment shortly (after the battery of tests, eye exams, stress test, etc!).
Anyway, for the most part I'm feeling fine, except for one thing that developed sporadically late last year and now occurs every night. I wake up several times a night and my hands range from being tingly to being completely numb. My hepatologist doesn't think this is due to cryoglobulinemia, but is doing a blood test to make sure.
My question is, do any of you have experience with this symptom? Can you have it with HepC in the absence of cryoglobulinemia? It's the one symptom that really freaks me out, and it seems to be getting worse. What have your doctors said about it? Can I be sure it's from the HepC and not, say, MS or something else? My doctor's great overall, but I was a little put off when he suggested I was probably sleeping on my hands! I've talked to twotells about it, and have seen posts on the subject from tallblonde and ringading, but wanted to get some other's experiences as well. Thanks so much!
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!
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
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.
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.
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.
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!
Geno type 2
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.
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
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.
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?
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 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.
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.
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.
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?
I've often heard of it as a symptom of HepC, but not really of treatment. However, I have heard that the sx of treatment can feel very simiilar to HepC symptoms, so this may be one of them as well! Oy.
i just read about the numb hand problems, i have it also,mostly in my fingers but my whole hand falls asleep at night and i have arthritic pain constantly in my hands,wrist and feet. that is what i initally went to the doctor about.i have known i have hep c for over a year now and am just gettng ready to start treatment.(things move slow when you lose your insurance)some days i can hardly walk and im unable to open cans or even turn my ignition in my car on witout using both hands.does anyone have arthritis symptoms that bad too ?
You are what you eat. If what you eat is not digested and/or utilized properly by the body, it seems like the entire system is vulnerable to a myriad of day to day challenges. Hep C definately interferes with digestion and processing of nutrients. The very best solution I have found AND the only successful one is to involve a naturuopathic physician on your health care team. They have vast amounts of knowledge regarding minerals, vitamins, trace elements and proteins that are needed by the body to keep it running in optimum performance. For those of us with Hep C, Naturopathic Physicians, in addition to our MDs, are a gift from God. I was diagnosed Hep C 14 years ago. Cannot be treated with any of the meds available to date for this virus, and also have been diagnosed with various neuropathies and other system breakdowns due to the virus itself and the cirrohsis. That's where the naturopath comes in to assist with the proper supplements and dietary advice. Since I incorporated naturuopathic medicine into my overall healthcare, my life with Hep C has made a 180 degree turn for the better... give it a try...you've got nothing to lose. Ye ole machine is still running strong...
I got numb hands with all 3 of my pregnancies. I tended to swell, and when I did, my hands got numb... especially at night. Mine was diagnosed as carpal tunnel. I got a wrist splint from WalMart and wore it to bed and things got MUCH better.
I did notice that the past couple of years my hands started getting numb again, and then in January I found out about my hep c. I noticed that I was often swollen in the mornings... which is the same time that my hands were numb, so I'm thinking that was why the hands were numb again.
Try getting a wrist splint. If it works, you know that is what your issue is, if it doesn't work then you should go to a doctor and have it checked out.
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