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Want to talk about Multiple Myeloma: Anyone else?
Blood Cancers & Disorders | Last Active: Jul 1, 2023 | Replies (401)Comment receiving replies
I have been trying to get help and told this is what I have, 2 years losing weight 50 lbs in two years unknown cause, symptoms : itching with skin, lesions, emphysema, heart abnormalities, avascular necrosis right hip, no alcohol, no steroids, increased all RBC, double vision, newly diagnosed Ana positive lupus, with kidney involvement, stage 3a. I’ve been label a psychiatric case, 4 doctors in 4 years, can’t get doctors to do JAK testing, or tell me anything! I’m really struggling here, not giving up! Greatest fear at female 61, losing independence with a stroke, family history of stoke on both sides of blood family! Any help, suggestions or support is greatly appreciated. In Dallas Texas area! Please help! So thankful I found this group! Don’t want an awful diagnosis but all other avenues are negative and I just need options and info? Thanks! Not so patently waiting….❤️✌️
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@splashgirl1961 First, welcome to Mayo Clinic Connect. I can imagine it is quite daunting to get a diagnosis without much support. In your area, have you been able to connect with a teaching hospital, like MD Anderson or Baylor University, to access a good medical team?
Multiple myeloma can be pretty confusing. Here is what Mayo Clinic has to say about it, and I am wondering if you have been able to get the testing done. Usually there are stages of progression, from MGUS [monoclonal gammopathy of unspecified significance] to SMM [smoldering multiple myeloma] before the multiple myeloma. https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378#:~:text=Multiple%20myeloma%20is%20a%20cancer,crowd%20out%20healthy%20blood%20cells.
Losing independence is a great fear for so many of us. From living and thriving alone, to driving, to everyday interface with friends and neighbors. I can certainly get that! What caused the label of "psychiatric case"? You rightfully deserve to have the answers to your questions, and an accurate assessment of your situation.
Ginger