cryoglobulinemia question

hi guys
i read an earlier tread re numbness in extremities. for the last few years i have had a problem with my fingers going numb, cold, them blackish. mentioned it to my doctor and she said it it either carpal tunnel or poor cirulation. seems to happen much more in the winter. does this sound more like cryoglobulinemia? is it something to be concerned about?

[Kalio1]

I think you should definately be checked for cryo. Did you explain these symptoms to your doctor? He should test you for it. I hope some of those here with cryo can post info for you.

[crazycanuck]

i didnt know i had hep c when i told my doctor about it. that was over a year ago. so i had better add it to my list of sx for when i find a doctor who knows more about hepatitis.

[MissMiss]

I was told the same thing with bluish/black hands before I knew I had HCV.  I was always negative for carpal tunnel too.  If you get the test, be sure they do it correctly.  I would suggest you search "hcv and cryoglogulinemia" or just cryo to be informed when you talk to your doctor.  They will often poopoo cryo because they don't know much about it.

It is very important to know.  Let us know and good luck.

miss

[chcnme]

I have heard about cyroglobinemia before but never really knew what it was or what it might mean.  What would this mean if we did have it?  I've got the numb hands.   This has been going on for 5 or more years.  Heck I've even got bouts of numb legs.  Not bad in the legs, but my hands go totally numb.  They have never turned blue or black or cold,  but there are times they feel totally numb, and they only go numb feeling when I'm almost asleep, and I've noticed at times they are numb when I've awakened in the night.  It's a bad feeling.  And I've noticed it in my legs, too.  If I reposition them or move them, the feeling returns.  Before diagnosis I was convinced I had multiple sclerosis because of this numb feeling.  I complained and complained about this numb feeling.  Would the doc have routinely checked me for cryo?  

Now I'm scared.  Well..I've been scared since diagnosis of the whole thing, but now I'm more scared because of what I'm reading about this cryo stuff.  What would this mean as far as disease progression or being able to treat?  Would it interfere with treatment?  I don't even know if I want to know.  I go back to Duke Thursday for a three month checkup.  I'm definitely going to ask him  (maybe they checked me already??)  but I'd like to know what anyone here has to say about this cryoglobinemia stuff.

[MissMiss]

Please don't be afraid.  Just get educated.  

Lots of things can cause numb fingers.  You just have to start ruling them out til you get a definite diagnosis.  The blood test for cryo is simple for you, just make sure the tech knows exactly how to do it.  The tube needs to be prewarmed, etc.

If you fingers go numb when you lie down, maybe you should check out your shoulder and neck.  Nerve impingement can do that.  Cryoglobulinemia are proteins that congeal when cold.  

If you test positive, I would recommend that you determine which kind, there are 3 kinds.  Have you started tx?  You want to be cryo negative by the end of tx.  I don't know how soon you want to be negative but definitely by the eot.  Once you start searching "hcv and cryo" you will understand more how important it is to be negative.  

Most who have cryo and hcv have it because of the hcv.  Many are asymptomatic.  There are folks without hcv who have cryo too.  

Just don't be scared.  It is treatable.  Let us know if you get tested.  Good luck!

miss

[NYgirl]

You won't know until you test but miss miss is right...it could just be a nerve in your neck or something that causes this and have nothing to do with the hcv or cryo or anything.

You should be tested for it and not guess - since a blood test is such an easy thing...I wouldn't bother even worrying about it since you can get an answer either way you know?

I'd have the test - get it done with.

[ladybug52]

Thank you so much for your kind response. I really have tried to describe the whole numb hand thing and I've said 'It's like when you're pregnant and your hands swell and go to sleep.' I wasn't talking to people who could relate I guess. that's funny because a few years back I was gooogling MS because I was sure it was mutiple slerosis or Lou Gehrigs disease. I have problems with my legs too.
But you know, it could be occupational for me as well, I use my hands and legs for my job. My brick wall has been used a lot lately for my own forehead
I would love to be able to play piano! That's awesome that you have that talent.
Thanks again,
Bug

[ladybug52]

I have a lot of the same symptoms and have been worried since I started reading about this on this forum.  Isn't it funny how things don't seem significant until someone with hepc has the same complaint? Then it's like "oh my gosh this isn't just aging, it might be related to the virus!" I do NOT have the ability to distinguish between the two. (age or virus)
Today I asked my pcp about it and he was not knowlegeable about
Cryoglobulinemia. I was so disappointed, I really thought he knew everything!
I will ask my doctor's nurse on the 8th if they will test for it. BTW, she mentioned that a lot of tests need to be done at a lab immediately with a good centrifuge and that's why they have a lab next door. I know I am not the best educated about this, has anyone else heard this before?
Thanks,
Bug

[chcnme]

Hey miss and nyg. Thanks so much for the info and reassurance.  I will ask to be tested for sure.  I can so distinctly remember the days of wondering if this numbness was anyway related to Hep C because it coincided with my worst period of fatigue and depression (and when it never went away and actually got worse, I really wondered.)  So, I'll stop wondering and ask the doc to just test me!  (I wonder if he will :)

Miss, no I'm not on treatment currently (did attempt 3 years ago and was pulled due to infection - no rescue drugs were used by that doc at that time.)  Other concerns, too, with my history of heart valve disease. My new doc (great doc) wanted to give me the best chance at successful treatment, and since I had stablized and was doing OK with all normal labs, we have been doing the watchful waiting approach for over a year.  He talked to me about the HCV 796 poly inhibitor a few weeks ago (a Phase II trial), and we will talk more about it Thursday.  I don't know that I'll go that route, though - not unless I can get rescue drugs outside the trial (if they will allow that.)  Just don't know yet what they will/won't allow.  Good news is - all my labs and enzymes have all been within normal limits since 2004  (with the exception of my last ALT, gone from 35 at 60 :( (not bad) but which will hopefully not continue to rise.  Recent Fibrosure showed grade1-2 stage1-2,which should give me a little reassurance.  

You all have a great evening, and hang in there with your tx!!

[chcnme]

Hi Lady. Please don't be worried! (lol I'm one to talk eh?) At this age, it really is hard to distinguish and easy to worry or think "uh oh!" :)  At least I'm laughing now over my panic over my numb hands, which could be as simple as a case of carpel tunnel and probably is since I have played piano all my life (can I borrow your brick wall for my forehead?)  My first GI doc three years ago (when I mentioned something about cryo to him) said little or nothing about it, and my current doc hasn't, but I'm still going to ask him if he'll test me for it.

That's good you don't have to travel to a lab to get blood drawn and that they do it right there.  My general doc also has a lab now in his office (it's so nice to have that convenience).  And my hep doc does, too.  I used to drive many miles to the doc and then more many miles to Lab Corp after the doc's visit, and in the beginning (and if you're sick) that can be a drag. You'll enjoy having the lab right there. It's real convenient.  Best of luck!  Let us know how it goes.  

[MissMiss]

Well said.  Just do it!

When you ask for the test, be prepared with a reason why tho.  My pcp said, "Well, let's just wait til you're thru tx."  I finally talked my hemo into doing the test.  Better to know before you start but anytime is good too.

[MissMiss]

For those that want to get the blood test for cryo, there are only a few labs around that really know how to do it.  More and more are offering it but the procedure is tricky.  

I have a bookmark on another computer (Black Friday sale got me a new one!) that I will try to post the link to that will tell you how it is done.  You could go to www.questdiagnostics.com
Click on All featured labs on the right
Click on Test Menu
Pick a regional lab
Click on C on the left
scroll down to cryo

One test will give a negative or a percent if positive.  The reflex test will give other information if it is positive.

It's the handling of the speciman in the first hour that is so sensitive.  I'll try to post the info on that in a short short.

miss

[nean08]

i'am 20 yrs old i just found out that i have Cryoglobulinemia.