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Research for rare autoimmune diseases
I've been diagnosed with cryoglobulinemia for a year now, and am still struggling to get my doctor's to get more accurate information. All I seem to get from all of them is that my tests are stable and improving. That doesn't help me try to avoid the issue in my system that led to the change. Before I was hospitalized my tests were normal. The things changed for who knows what reason. I just don't want a relapse or repeat of that ordeal.
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I am so sorry. It's frustrating when you cannot get a diagnosis and treat. Hugs & Prayers....
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1 Reaction@zebra2022 Here is what the Rare Disease network has to say about your condition: https://rarediseases.org/rare-diseases/mixed-cryoglobulinemia/
And here is what Mayo Clinic has to say: https://www.mayoclinic.org/diseases-conditions/cryoglobulinemia/symptoms-causes/syc-20371244
Do you think your situation may or may not be related to any other health concern you have going on right now?
Ginger
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3 ReactionsI already had the sjogrens along with the ra factor, plus r.a.. I also have leukocytoclastic vasculitis as well. I never had hep c so I know my cryo was not from that. I never had very many infections (can't remember the last one, let alone being sick). I didn't know there was an issue until I went to the ER for a migraine and was admitted for heart failure. Spent a total of 19 days in the hospital. When they diagnosed me through a biopsy in my kidney. I had so many procedures and tests done during that time it would make your head spin.
I'm just looking for answers and my doctor's seem to want to pass me off to someone else because they don't know.
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2 Reactions@zebra2022 I certainly understand and respect your need for more information. I needed it also. Are you being seen at a university or comprehensive medical center? I have learned so much from my doctor at the university med center.
You can also call
https://rarediseases.info.nih.gov/ Genetic and Rare Diseases. Ask if they can give you a name of a doctor in your area/state. See what other resources they have.
https://health.usnews.com/best-hospitals/rankings/rheumatology You can also check out this list of best hospitals.
Can you try these and then let me know what you find?
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1 Reaction@zebra2022 here is an example of what can be found on Google Scholar. The second link takes you to a whole list of articles.
https://ashpublications.org/blood/article/129/3/289/36030/How-I-treat-cryoglobulinemia
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C6&q=cryoglobulinemia&oq=cryoglobulem
You can get to Google Scholar by going to you search engine and entering ‘Google Scholar’
Try it!
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2 ReactionsZebra2022, welcome to the club. I have been tested for and diagnosed with a generous number of AI stuff, including LGMDr23, LAMA2, PNH, diabetes, many cancers, and other stuff. I have no way of knowing whether any of this will kill me or just give the MDs an excuse to make money off of my situation. "Oh, your tests are stable. You should live another year or so." I have tried the University route, from Stanford to UNLV to OHSU to Mayo to a dozen others. The most helpful response so for is (and I quote) "Well, you must be all right. You are not dead yet." My first DX came when I was less than an hour old, 83 years ago. "Mrs....., your son will never live to see his 3rd birthday. " My only treatment has been surgery for some of the cancers. oldkarl
were you hospitalized because of cryo symptoms-what were they (i have cryo type 3)