| Cryoglobulinemia: My Story |
| To really start at the beginning, I have to go back several years. Cryoglobulinemia is a very insidious disease. My doctor estimates that I have had it for about 8 years, based on my symptoms. It began back in 1992. I was a new student, attending the OSU/NCTC campus in Mansfield. I had been diagnosed with gallbladder disease and was to have surgery. My physician made it clear that I was not to take any aspirin related products before the surgery. I fully agreed with this as I cannot take aspirin products anyway (at least I shouldn't...history of ulcers). On the day of surgery, instead of taking the estimated 90 minutes, it lasted from 9 am until 2pm. Apparently, according to my surgeon, I was a "bleeder". I was admonished in my hospital room for having taken aspirin after being told not to. I had not taken any aspirin products in about 3 years at the time. This was the first sign that something was amiss, though, at the time, we did not realize this. In 1994, I began having problems related to intolerance to the cold. As somebody whose favorite season was winter, this upset me alot. I lived for the snow, the making of snow angels and snowball fights. That year, however, whenever I went into the cold, my fingers turned a dark dusky blue color. At the time, I did not think much of it. In 1995, I began working with a woman who had the same vascular difficulty that I had. She told me it was called Raynaud's phenomenon. Her Raynaud's was secondary to the disease Scleroderma. I did not have any other symptoms (or so I thought) so I didn't really worry about having the disease she had. It can't happen to me, right? As the years progressed, the vascular problems worsened. Like a car going to the mechanics, my fingers never turned blue before a doctor's visit. LOL I did, however, began to have problems with a "virus". Back in 1999, while going through physical therapy post back surgery, I began to have lots of muscle and joint pain. It became so bad that my physical therapist had to make accomodations for my exercise program. I went to the doctor complaining about all my symptoms....muscle aches, joint pain, fatigue, weakness and headaches. I also began to have problems with my memory and cognitive abilities. I was told that I probably had a vrial infection and I'd have to wait for it to run its course. The "virus" lingered all winter. I began to think maybe I had infectious mononeucliosis caused by the Epstein-Barr virus but I came out negative for that. By January, I began to notice a rash across my face, in the shape of a butterfly. My husband had seen this rash on several occasions but always thought it was wind burn or too much sun. He realized now, that was not the case. I was seen by my doctor in late January 2000. He ordered blood work to check for Lupus. Not surprisingly, all tests came back negative with the exception of my sedamentation rate. It was somewhat high, which is indicative of an inflammatory process. By March, my symptoms became exacerbated. I was finally to the point of having difficulty walking. My thighs, ankles, hips and even the palms of my hands hurt. Even my raynaud's had become worse...a temperature change in the house would set off an attack. I was called by my employer offering me an assignment at double pay. I had to turn it down as I could not even walk. As soon as I hung up, I called my doctor and begged them to get me in. Everything that had built up over the past 6 months came flooding forward. I had alot of self-doubt regarding my symptoms. I had wondered if it was all in my head, was I a hypochondriac, did Den think I was crazy? I spent the morning crying to my doctor, who said I had a "classic case of Lupus". Once again, I was given a battery of tests...this time, also being tested for Scleroderma, Rheumatoid Arthritis, Sogern's, etc. Like the last time, all tests were negative except the sed rate which was even higher than before. At this point, my doctor knew something was really wrong but did not know where else to look. He referred me to a rheumatologist and I began seeing him in April 2000. During my first visit, my rheumatologist did an extensive examination. He found my nail beds abnormal (consistent with vascular changes), I exhibited livedo in my lower extremities and somewhat in my upper extremities. I was positive for purpura and bruising. He also found swollen lymph nodes. Right at that visit, before any tests were even performed, my doctor said he thought I had a very rare condition called Cryoglobulinemia. My first reaction was "cryo what??!!" My doctor explained the incidence of cryoglobulinemia runs at about 1:100,000...it is very rare. In fact, the only other time he had seen anybody with this autoimmune disease was in medical school. I was his first and only patient with it up until May 2002 when he told me he now has five patients with it. I was sent to the hospital the next morning for 40 blood tests as well as a full body CT scan. My blood tests proved that I do have cryoglobulinemia. In fact, I had 4 times the cryoglobulins than the normal rate. Not only that, my protime was high...meaning it takes longer for my blood to clot than it should (recall my surgery in 1992). Finally, an answer! I was not crazy...and God Bless my doctor, he is a genius! :-) Thankfully, my CT scan came out normal. I have been on anti-inflammatories for two years now. I have tried, unsuccessfully, Vioxx, Mobic , Daypro, Relafen and Lodine. They all left me with horrible side effects. I am currently on Bextra and, so far, it has been working well for most part. I take either Tylenol or Ultram for breakthrough pain. My headaches, for most part, are under control and my memory problems are gone as long as my cryo levels stay down. In fact, when my symptoms flare, and they do, I know right away that my cryoglobulins have risen. I still have problems with Raynaud's. In fact, it is getting worse. My hands turn blue at the slightest temperature drop and then turn beet red and burn when the temperature goes up a few degrees. My doctor will eventually put me on Procardia to try to control this. At this point in my disease, all I can do is watch. I see the rheumatologist every three months and have blood work on the same schedule. I am not letting this get me down though. Since I was diagnosed, I have worked for the agency, have travelled as well as returning to school full time. No, not going to let this disease win...not at all. |