Cryoglobulinemia

[wonderwoman3333]

I have cryoglobulinemia.  I have had it for several years but have had limited treatment because I have no insurance.  I do not have Hepatitus C but have been told I have fibromyalgia.    Is there any one out there that can help me cope with this disease?

Nothing in my life is the same this disease has taken over.  I would like to communicate with someone that can relate.

Thanks!

[wonderwoman3333]

Thank you so much!  I finally got the website.  I finally found someone that knows my pain.  As weird as it sounds it is great to find someone that knows what this is like.  You would not wish this disease on someone you think you hate.

[copyman]

Wonder, sorry you misunderstood me. Even though i have some of the symptoms i have not been diagnosed with cryo. I do have hepatitis C so i know that it is possible for me to get it and that is why i asked about if i cured the HCV would the cryo go away. wishing you the best.

[wonderwoman3333]

Thanks for responding.  I wish I had a problem of falling asleep.  I hurt so bad that I have trouble sleeping.  The Neurotin is helping for the neuropathy and has helped my sleeping.  Do you have severe pain?  
I have been told by the 2 doctors that know anything about cryo that has treated me that it will never go away that you can only improve the symptoms.  

Does air condition bother you?  

I have every color turtle neck and in the winter I go at all efforts to never let the cold touch my skin.  What coping skills do you have?  Anybody with this cryo please give me suggestions.  

I tried the website but could not get anything to come up.  I will try it again later.

Thanks for responding!

[copyman]

does the Cryoglobulinemia go away if you cure the HCV? i think i have read that the HCV causes inflamation which can cause it so if you cure the HCV it will go away.

[dz56]

I have never heard of any support groups for cryo.  I think the closest would be is Hep C or lupus.  When I first got it years ago my doctor told me it was very similar to lupus.  He also asked me if it's hard for me to stay awake after eating because somehow that has something to do with it.  They hardly knew anything about it then.  I quit the steroids also because I didn't want the weight gain.  You might want to try the below link.  This woman has cryo.  Her story is interesting and inspiring.  She might be able to answer some questions for you.  Talk to you soon.

http://web.mac.com/graciejc/iWeb/Gracie,%20Diane%20Dike,%20Ph.D./Diane%20Dike's%20Battle%20with%20Cryoglobulinemia.html

[wonderwoman3333]

Yours sounds so similar to mine.  I know exactly what you are saying about the test is normal and they can't find the problem ...etc.

I do not know how I got the mercury poisoning.  I will not eat fish of any kind anymore.  Back to my twin brother, we were in a few numbers having the same amount of poisoning.  We think it is where our dad would spray all kinds of chemicals and not think anything  or it.  My dad passed away from ALS and my mom from Parkinsan's.                        

Are there any support groups that you know of for the cryoglobulinemia?

I am on steroids now but am not tolerating them very well.  I gained 10 pounds in one week.  As of yesterday, I started cutting back on them.  One doctor told me it was more dangerous to not take the steroids because if I get extremely cold it could cause me to have a stroke or heart attack.  Do they tell you those things?

Thank you so much for chatting with me!

[dz56]

It's a long a complicated story.  It began when I was pregnant 31 years ago.  I woke up and my hands were numb and tingling.  Over the course of a few days that spread throughout my entire body including my tongue and top of my head.  And I have that to this very day.  It never goes away although sometimes it's much worse.  A few years after that I developed these horrible miserable pains in my head.  They were like electric shocks that came fast with a crushing pressure in your head.  Right before you think you are going to die it stops.  I also have Raynaud's.  At first they thought I had MS then they ruled that out when I tested positive for cryoglobulinemia.  I have no idea how I got it.  The only thing was when I was around two years old I was exposed to a massive amount of radiation therapy for tonsils (they did dumb stuff like that back then which later proved to cause thyroid cancer).  Because of that I had two thyroid surgeries and it's still growing on what's left.  Medical professionals claim that has nothing to do with it but I have my doubts.  I never did drugs or alcohol so it's really hard to tell how I got it.  

I took steroids for it early on but for a very very short time.  I was actually retested yesterday along with a whole bunch of new tests they haven't tried on me.  Infact I was just tested recently for several things (last week I went through a cerebral angiogram to see if I had brain vasculitis but that was normal).  

To be perfectly honest it's stayed much the same over the 25 years and I guess I'm lucky because I function really well with it.  I don't get the head pains that much anymore but the tingling and numbness is getting worse.  How did you get the mercury poisoning?  I'm asking because for the last 35 years I have eaten more than my share of tuna.  I'm talking several cans a week.  

My only regret is that I'm sorry I started all this testing again.  Everytime they call and tell you a test came out normal and they can't find the problem when you know you are sick is much worse than the disease itself.

Good luck to you and I'll keep looking at this thread to see if anything is new.  I'll keep you posted on mine.

[wonderwoman3333]

I bet the blood was not handled properly is why it tested negative.  I would say it is still there from what I have been told it never goes away.  What medicines do you take?  How fast has it progressed over the 25 years?  Do you have any idea what caused yours?  I have had mercury and lead poisoning and think it is related.  My twin brother has the same probelms I do but not as bad.  He has never been diagnosed and is able to carry on a normal life.

Thank you for responding!  

[dz56]

I can relate completely.  I was diagnosed with cryo (also non Hep C) 25 years ago.  Tested positive for years.  Last year tested negative but still have all the miserable symptoms, and they are miserable.  Mostly neuropathy issues.  I went to a new doctor at a big Chicago medical center yesterday because they are trying to find out if there is an underlying disorder.   He told me because it is so rare no one really knows too much about it.  Recently another doctor told me even if the cryo goes away if it is in your nerves it will always be there regardless.  Good luck and I hope you start feeling better soon.