You've got MGUS
Me too!!
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...first Nazi neurologist was very quick to tie in the MGUS with my neuropathy and I might as well just get used to watched my body slowly inch toward a horrible cancer. Multiple Myeloma.
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Get that idea of "slowly inching your way toward a horrible cancer" OUT OF YOUR HEAD.
I was diagnosed in Spring 1990. It took me a few years to get past that feeling. It's hard to be diagnosed with something that may or not go terminal.
There's fantastic research going on at the Dana-Farber in Boston and other places across the country. Dana-Farber was the first place to have what they called a 'cure'. "Cure" in that instance meant no evidence of the multiple myeloma, but, she still had the m-component in her blood. Francesca Morosani Thompson actually still ended up dying from multiple myeloma in 1996.
Interestingly, at the same time that I was diagnosed with MGUS and the heartless, thoughtless, totally-lacking-in-compassion doctor from Massachusetts General Hospital told me I might or might not go over to multiple myeloma, the Readers Digest had an excerpt from Francesca Thompson's book. That was a huge slap in the face.
It took sitting down and really talking with a good hematologist and a good oncologist and seeing the numbers on the tests year-after-year stay pretty stable.
I now just get the immunoelectrophoresis done every 12 months and get my Effexor XR from my primary care physician. But, I do have an oncologist at Dana-Farber that knows me -- haven't seen him in years, but, he's good and he's compassionate.
You have to get your head wrapped around the FACT that you do not have multiple myeloma now. **NOW** is what you look at. In the meantime, there's fantastic research going on.
I wish that they had recommended periodic plasmapharesis to get the protein out of the blood. I think that would have saved a lot of the damage to the nerves. There doesn't seem to be agreement about the damage to the nerves--but, I'm living proof that it damages the nerves--that's enough for me. *I* seem to have gotten to a stabilization point as far as the damage to the nerves goes. The sensation has been pretty stable for quite a few years now. The Effexor XR works for me. I actually could not open jars before I started the Effexor XR -- it was just too painful and I didn't have the strength. Now I can do it without pre-loosening the covers
Stay strong. And BELIEVE. Hugs.
Barb
PS: I've actually got bookmarks:
MGUS-Multiple Myeloma-Amyloidosis
(press the [page-down] key once to get to the appropriate section)