Cryoglobulinemia

[JenJen54]

I was diagnosed with Cryoglobulinemia and Vasculitis in Aug. 2005. My Doctor has done a million test and we can not find what is causing this. I do not have HepC, cancer, lupus or any of the usual suspects. I have been on Prednisone for 2.5 yrs. along with various other meds b/c we are trying to get me off the prednisone. Because of the Vasculitis I have neuropathy, but can not afford meds. for that. I lost my job when they found out I was sick, so I have no insurance. Does anyone have any ideas as to what might be causing my illness? My legs hurt so much and it feels as if my family doesn't think anything is wrong with me because I look ok. I have chronic fatigue and also myoclonus.

[sadie1246]

When you are on predisone everyone says doesn't she or he look good not knowing how they feel.  The predisone fills out your features making you look younger even when you feel like hell.  I have vasculitis and i don't look ill and i am sicker than a dog.  

Have faith, don't listen to them and I hope you feel better.

[kate1975]

Its kinda nice to know i am not alone in the leg pain world. I am 33 and have had a high Sed rate for 12 years..Its in the 100's docs have blown it off until now. I have found a wonderful Rhuemy that listens. My legs hurt so bad, it started in a little spot by my shin and now goes up to my thighs hurts worse when lying down. Is that what it does to you?
He believes I too have vasculitus, I will be so thankful to have a name for what ever I have, I stay so tired and miserable I have 3 little kids and just try to keep going for them. My family is supportive, I just wish they all new more about it. Being that we done look different...:}

[feedup13]

Hi, I am interested in finding out what all our symptoms are.  I have exteme pain and stiffness and lately I have been losing weight even though I eat.  Also extreme fatigue.  I know that I have chronic EBV and have been diagnosed with lupus but I believe that there is something else going on right now.  I also have alot of pain and stiffness in my hips and lower back.  Thanks for any advice.  I have had MRI that shows 3 dehydrated discs and a fracture on in my pelvic area and a fracture in my right arm by top of elbow.  I have not had any falls or other injuries that would account for these fractures.  I also have borderline graves.  Thanks for any advice you may have on the disease that you are suffering with.

[alagirl]

It is a rare disease, but unfortunately one with which my grandmother was just diagnosed: multiple myeloma.  Cryoglobulinemia is one of the side effects of this particular cancer so its one of the diseases that should be tested for.  They look for protein in the urine, they do a bone scan, and if need be, they can confirm with bone marrow biopsy.  I reiterate though that multiple myeloma is an exceedingly rare disease.

[dz56]

Sorry to hear you are having all these problems.  25 years ago I was diagnosed with cryoglobulinemia (no Hep C involvement). I acquired that when I was pregnant 31 years ago. I was 25 at the time.  Woke up one day both hands were numb and within the course of a few days my entire body was numb and tingling including my head, mouth and tongue. It’s been like that ever since. They had a hard time diagnosing it and at first thought it was MS. I tested positive for years for cryoglobulinemia but this year the test was negative. I still have all the symptoms which are many, but mostly peripheral neuropathy. Doctors believe there is an underlying disorder but are having difficulty diagnosing it. My neurologist thinks it is either MS or some connective tissue disease. I had the ANA test earlier in the year and that was normal. I’m a non-smoker, non-drinker, and non-drug user. I’m at my target weight, eat healthy and am an avid exercise fanatic. I recently had a brain MRI and am waiting to meet with the neurologist to discuss results. My pcp tells me there are some nonspecific findings that could mean MS or blood vessel disorders. I also was just diagnosed with mild secondary pulmonary hypertension (main symptoms chest tightness and throbbing/pounding neck and chest), but am waiting to talk to the pulmonary specialist.  Here are some thoughts lupus, sjogren's syndrome or for that matter any connective tissue or autoimmune disease.  

You might want to have your thyroid checked.  I had 2 partial thyroidectomys (non-cancerous findings) the first one 33 years ago the last one May 2007.  This was all due to radiation treatments they did in the 1950s to the head and neck ofr tonsils and adenoid problems, really bad idea.  Now my thyroid antibodies are high and my ENT says whatever is wrong with me is causing it.  

I understand the best place to go for cryo is the Cleveland Clinic although I haven't been there.  Nothing would make me happier than finding my underlying disease so I can have closure and move on.  Plus I have all this collateral damage I've acquired because of it and no one knows how to treat it.  You really need to research this extensively on the internet because it is so rare.  Good luck to you and hope your problem is resolved very soon.

dz56