An update and learned a lot at my specialist appointment yesterday
For those who are not familiar with my story, I have multiple myeloma, not MS, but for two years had progressive MS type symptoms.
So we met the Myeloma specialist yesterday to talk about my stem cell transplant.
She was extremely knowledgeable and spent an hour talking with us, and really explained Myeloma, and my treatment.
She said I have had Myeloma for at least 2 years, and all my symptoms including my foggy vision, numb hands, Trigeminal Nerve issues, and bladder issues were from it. (just to let you know I have had my eyes checked about 10 times, and saw at least 5 ophthalmologists who could not explain why my eyesight was foggy).
I have one of the rarer issues from Myeloma which is thick blood, or hyperviscosity. Because the blood is thick, it does not make it to all the small veins such as those that supply the eyes. And also leads to things Raynauds and other issues like nerve issues. With treatment this should improve!
I am doing ok, but find it hard to think about my future as so much is not known about curing Myeloma and the stem cell transplant would likely get my 5 years remission
No the doctor didn't mention that. I should ask. This appointment was with the top Doctor in Canada for Myeloma who coordinates stem cell transplants, so she was able to confidently say my symptoms were Myeloma (the foggy vision) where as my other doctor didn't think the vision was related, and she hadn't talked to me about the hyperviscositywhich is not that common only 5% of people with MM have it.
We talked about what is Myeloma, what plasma is supposed to do and what goes wrong. The doctor uses the analogy of a light switch turning off and on but in my case it go left on so the plasma keeps making antibodies but they are not for a specific illness. Many patients presentation is bone pain, fractures which I don't really have it, but how my presentation is not that uncommon with various general symptoms.
We talked about some of the other issues, including anemia and infections.
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