Back to the ol numb hand and arm thing...and other posts !!

[DownThisRoad]

I posted a couple of times regarding my hand and arms going numb.  This is continuing to happen and happen more often now on my 7 weeks post treatment.

The numbness and all started about month 2 on the tx meds, continuued on a regular basis and then went away around month 7.  Now since I've stopped the tx meds, my arm and hand are always and I mean always numb and falling asleep.

It use to just be my right arm and hand, now my left hand is going asleep all the time.  Use to be just every other day for a couple of minutes....now it is happening about 4 times a day and starting to happen in my left arm and hand as well and I wake up 2 or 3 times a night with numb hands and arm.

I've been to my doctor and he has taken a chest xray and blood tests.  If nothing is shown in these two tests, then I'm off to the neurologist for more testing.

Anyone one else suffering with neurology complication due to hep, hep treatment meds or after finishing the meds?

Maybe it's not the results from my treatment but so curious that it started when I was on the meds and now continuing after the meds.  I'm so scared that I've got some type of permanent damage due to this treatment.
~dtr.

[ringeding]

hey there, wow, sorry that must be so scarey for you.  i too remember experiencing that and it freaked me out...i was panicked beyond belief. at first, thought maybe i was having a stroke. if i remember correctly, yes it could be very well hep/interferon related.  your best bet is to get to the neuroligist asap...i have read where it does spontaniously go away on its own, and then others that have this lingering effect for quite some time.  i believe there is a coralation between the interferon and this disorder...again the best bet is a neuoligist as i am not 100% on this, but i do know others have complained about this also.  interesting enough, i seem to remember this happening before tx....and then around 6 weeks on tx really got disturbing, and was nalmost constant some days, starting with my baby finger and working all the way up to my shoulder, then, was on and off periodically for me. i wish you well with this and that you get some answers.  i tried to avoid typing unless my hands were positioned lower than wrists....but it did subside.....knock x 3 at least for know.....hang in there and let me know what the specialist says...oh yah and also make sure if you haven't already, that your hep doctor knows about this....

kimmy

[OkieJim]

I'm so sorry to hear this. Yes do go to the DR and get this checked out right away. This could be a serious thing. I may not be related to TX. I will say a prayer for you. I have not experienced this but was only on 24 weeks of TX. You were there for me and now I'm here prayer for you now. Keep us informed.

Love Peace and Happiness.

[oldhippiechick67]

As you well know, HepC can cause any and all kindsa symptoms (sx).  Sudden numbness and tingling in a left arm/hand or right, can be worrisome for heart problems ie. attack, MI.  But since your doc has checked you and this has come and gone and is back now worse than ever, I agree seeing a neurologist is indicated.  I surely hope it isnt permanent!  My husb. had those same sx, and as far as I know he doesnt have hepC...but he had nerve entrapment from years of hard work, lifting, running pneumatic tools at work etc.  So he had the operations, and he was much better for over a yr or 2, but now the arthritis is killing him in the same sites. He isnt numb there though.  I had some tingling in my neck, and headaches that lasted 3 weeks after tx.  I went to a GOOD massuese (sp?) and she got the muscle spasms out and I feel much better!
I have read that fibromyalgia is being linked to hepC.  Best to ya DTR!    Aug/OHC

[CARUU]

I have numbness and tingling my in right hand.  Also, my hand is ice cold a lot of the time.  I've been to a neurologist (many times) for trapezius muscle atrophy and in the process discovered bulging cervical discs.  He thinks this is the cause of the hand numbness and tingling.  I'm having a bunch of other issues and am now going to a rhemumatologist to be checked out for RA, lupus, fibromyalgia, etc.  My appt. is this Friday.  Anyway, I think the hand problem could be HCV related after hearing how many others have this and because I have elevated ANA and possible rheum. problem.  It's very complicated and I hope I get some answers soon.  I'm wishing you the best and hope you get to the bottom of it soon.  It seems to be taking WAY TOO LONG for me to get good answers for all of the symptoms that come and go and change.  I never know what to expect from day to day.  Good luck and let me know how it goes. caruu

F, 53, HCV 25 yrs, type 2a, vl 140,000
completed tx 4/1/04
left with: muscle/tendon/joint pain; breathing problems; unstable thyroid (hyper during tx and now headed toward hypo); tingling and cold hand; unrefreshed sleep, etc., etc.

[jonihs]

I also have had this since completing tx., however I'm not so anxious to run off to the Dr. because as a recovering addict, I've went through this many times before w/ withdrawl. The muscles in my neck become very tight and that affects both nerves and circulation and I've noticed the muscles have been very tight since quitting tx., almost like my shoulders are hunched up. This also affects my sleep as I don't completely relax. I know from experience that after a couple months it gets better and then w/ theraputic massage it goes away completely. I don't know how long you've been off tx. but if it's been more than a couple months, you should see a Dr. but if it's been less, give it time.  Just my 2 cents worth.    Joni

[jonihs]

Hi, I just had to dump my hard-drive and don't have your web address anymore. Could you please post it, and if you still update I copleted 24/24 on the 7th of May. Pcr results are coming.  Thanks bunches. Joni

[DoubleDose]

Hi to all of you, and I have to add my two cents as well, since the post-tx issue is becoming more and more a similar experience for many of us.  I finished tx in October and have been clear ever since, but have the neurological, rheumatic, joint, and fatigue related symptoms many seem to be experiencing.  I began with the endocrinologist, to address my abnormal thyroid (post-tx) with slightly elevated TSH, and hypo. type symptoms.  I am on synthroid, but to be honest, still feel essentially the same.  I have only been on for four weeks though, and at a moderate dosage, 50 mcg.

Next I saw the rheumatologist, who sympathized, and said that most of the post interferon patients he sees have similar symptoms...whether they were treated for HCV, MS, or other illnesses.  He ran a battery of tests, and the word just received today was......no RA, no Lupus, no sjogrens, etc.  Which is just what he predicted.  He said there are no clear answers yet to these issues, and is referring me to a top oral surgeon who is doing research on post-tx, HCV patients with glandular, and inflammatory issues  ( I have lots of Sjogrens Syndrome type sx).  He will probably do several biopsies, and other tests.  

I guess the next stops will be:  Neurologist, Back/Neck/Joint specialist, and maybe hematologist. I want to eliminate as much as possible, even if a positive and specific diagnosis is impossible to obtain.

I also wonder why so many of us have back and neck disc problems???  Seems like most long-term HCV'ers have some type of bulging or irritated discs.  Could the HCV directly destroy disc and connective tissues??  I'm sure the interferon helps make it worse as well.  I now have some good days, and then bad ones, where I feel like my spinal column is 'electrified', with deep pinching pain in my mid-back and ribs, dizziness, and tension throughout.  I also feel almost spastic or uncoordinated during these attacks.  My eyes are filled with pressure, and dry/irritated much of the time.  Energy level waxes and wanes.  
Wierd stuff!  Let's all hope that much of it wears off over the months and years.  It is certainly not what you would hope for upon SVR!!!  Good luck to  all of you.  Comments welcome!!!!

WHERE IS WILLING these days???  Are you still OK???

[cindee]

dtr @ curuu, Hi and I too am having the same numbness and tingling. Mine is in my left hand, my pinky finger looks like the tip has been chemically burned....it is do numb that my GP couldn't believe how hard he could squeeze it and it didn't cause any pain. The numbess is also in my ring finger, but not as bad. But the numbness travels up my arm and stops between my wrist and elbow.

Curuu and mine sound almost just alike...BTW I posted to you curuu a few days ago. I guess you didn't see it. But I had to go to my GP because I was having extreme pain in my legs and feet, with lots of swelling. He gave me potassium and lacix...told me to stop meds when it cleared up.

I had seen my new hepatologist and he told me to get to my GI asap so I went to next day. Anyways long story short...I am being referred to a neuologist about my numbness. I am not on tx now. I finished 48wks and  unfortantely relapsed, the humbness did start during tx and I've been off tx since wk of Nov 7th. I will however be starting a clinical trial in the near future. And curuu in case you missed my post...my last bx. showed grade1, stage 0-1...pretty good huh? So I know the combo did a lot of good work for my liver!!!!! Oh yeah my bx showed no scarring!!! Can't get much better than that huh???? Ilove you all so much, and you are always in my prayers!!!! Cindee

[cuteus]

I can not relate to post tx neuropathy since I am still on tx, but also because the numbness, tingling, high rheum factor, carpal tunnel syndrome, joint aches were ALL present before tx.
If you do a search on reactive arthritis you will learn that infections, especially chronic infections like hcv can cause this, and damage is sometimes permanent.
All of us should be tested for HLA-b27 as it seems to be related to some types of arthritis and neuropathies.
I am not doubting that high doses of interferon can exarcebate conditions to which we are prone, but it also seems it all started with our own immune reaction to the hcv, and the meds might have speeded it up.
I recently found out my dr had done the HLA test back in 2002. Negative then, now I wonder if I should repeat it. I see him this wk, so I will ask.

[DoubleDose]

I agree that the HCV probably originally initiated the whole arthritic, autoimmune, neuropathic set of symptoms we seem to widely exhibit.  I also had variations on all the above, well before either of my two tx'es, although the current post-tx symptoms are more intense, and more 'on and off' than prior to tx.  I think you are correct in thinking that interferon may exacerbate the already existing reactive syndromes.  The key question becomes:  how can the medical community understand, recognize, and ultimately learn to treat these syndromes so that our long term outcomes can turn out closer to normal than to living as a chronic set of painful symptoms!
Possibly some of the new, experimental autoimmune investigational therapies will hold some promise.

[CARUU]

Cindee, I didn't see your post the other day.  Great news about your bx!  You have a great attitude that, I'm sure, is helping you get through all of this.

Doubledose, your story sounds VERY familiar.  I sure hope I can stop adding new doc appointments to my schedule, but I hear you about wanting to rule out what you can.

Cuteus, I agree that this is probably HCV related and the tx has exaggerated the symptoms.  I had it all prior to tx and now it seems to be worse.

I don't know what to expect with seeing the rheumatologist, but have a feeling I still won't have a definitive answer.  I am mostly hoping for sx relief and ability to make it thru full days of work without having to leave after a few hours.

Thanks to all for info and support, caruu

[cuteus]

I personally got more answers from my neurologist than from the rheumatologists I saw.  the emg tests can determine how bad the nerve damage is. I hope your rheumatologist can answer your questions, don't forget the hla-b27 test.
I can't remember if they did the cryoglobulin one?
I have to sleep with hand braces so that I don't lose feeling the next day, it seems I have bad habit of crushing hands and arms while I sleep.
keep us posted,k?
double: I hear you, we can't even get decent geno 1 studies...so the one you wish for might be a long time coming...maybe WE should collect the data and forward it ourselves, for retrospect studies...

vicki: I like you better when you see the funny side...be easy on yourself,  many of us get in trouble at some point from our writing unskills. life goes on, I want you in mine....keep it light...laughter cures!

[oldhippiechick67]

Very interesting about all the same sx we are experiencing post tx... very very interesting, (flashbacks of that SockItToMe show, Rowan & Martin, Goldie Hawn etc).  
Joni - me same sx as you, and the theraputic massage helped amazingly well.  My web site is  www.geocities.com/auggieaz   I need to add some new stuff soon, so thanks for your info.  I have a little story I would like to tell you, so I will email you with it.
Dbldose - thanks for that info on the rheumatologist, and its great he knew about other post interferon/heppers having these symptoms...wow, I was thinking of going to see one, but my RA factor is only 21 post tx so not bad.  Someone should do a study on us, and pay us lots and lots of $$$ doncha think??  
I heard from Willing a few months ago, he was doing fine as far as my brain fog can remember ..and I think I saw him pop in here occas. do you have his email? cuz if not I will tell him you were inquiring.  
Good luck to all with our post tx sx!

[CARUU]

Your comment about getting the most answers from your neurologist was interesting to me.  I've been to GI, Neuro, PCP, Eye Doc, Psychologist and I've gotten the most satisfaction from the NURSE PRACTIONER.  She is the one who finally said my breathing problem is not anxiety and tested me for COPD/pnuemonia.  I now have a dx of COPD.  She also had me tested for the extreme memory loss (EEG and MRI).  Those tests were negative and she's now talking with the drug reps to see if it was Wellbutrin withdrawl (my neuro casually told me to stop the wellbutrin and start lexapro).  I stopped the wellb and never started the lexapro.  I am starting to feel like my thinking is getting better.  She also is the one who discovered the 1:320 elevated ANA and referred me to a rehumatologist. I wonder if a lot of the brain fog is drug related (ad, ativan, ambien, trazadone(I only tried a 1/4 tab for 3 nights and felt like I was a zombie). They have also had me on paxil, lexapro, effexor, and more. Do these docs just want to drug us so we'll shut up and go away?  The only sleeping drug I really feel like I need is the ambien to fall asleep and that's the one my PCP wants me to get off of!  Oh, and the nurse practioner prescribed celebrex 2/day (rather than waiting until I feel like ****).  It's helping the joint/tension/muscle pain.  I'm going to stick with her for now! caruu

[jonihs]

I am breathlessly awaiting your e-mail!! Joni