[beckycraze]

It started as "restless body syndrome"

by beckycraze on Tue Aug 20, 2013 5:46 pm

My journey with multiple myeloma began in December 2010. I had gone to my rheumatologist for a routine visit…I’ve had fibromyalgia for probably 20 years. I told him my restless leg syndrome seemed to have turned into “restless body”…I hurt all over. He ordered a serum protein electrophoresis and it came back as 2.2.

From there I went to a oncology hematologist. He ran all the usual tests for myeloma and concluded I had MGUS. He has monitored me closely. During these past 2+ years my my M-1 spike has risen to 4.4 and my plasma cells are at 58%–they started out at 7%.

I went to Ohio State in May for a stem cell consultation…they are projecting I will need a transplant within 2 years but my oncologist here says it won’t be that long. I go this Thurs for followup blood work and then see the oncologist on the 29th for the results. This is always a tense time waiting to see if this will be the time I have to start chemo.

I am very active but the body pain is so bad most of the time. My greatest relief comes from a nice tub of hot water and my portable tub spa. My niece is into her 10th year of remission from myeloma, but she also developed amyloidosis two days after finding out she had multiple myeloma. Her kidneys shut down and she has been on dialysis ever since. She has gone through so many ups and downs but has been such an inspiration.

I also have two cousins on my Dad’s side and two cousins on my Mom’s side that have passed from multiple myeloma. So, you see I am no stranger to multiple myeloma…I know it is not an easy battle…but God “led me to it” and he will take the journey with me. I pray that it isn’t passed on to my children and their children. I plan to enjoy each day and take things as they come.

[Ricardo]

Re: It started as "restless body syndrome"

by Ricardo on Wed Aug 21, 2013 6:32 pm

That's a great phrase, Becky - "Restless body syndrome."

Thanks for introducing yourself. I was wondering what your current diagnosis is. Is it smoldering myeloma?

I ask because, on the one hand, you suggest that you're not currently being treated, which would indicate that you have smoldering, rather than active, myeloma.

Yet, at the same time, you describe having symptoms of your disease, and generally when myeloma starts having symptoms, it's considered active and therefore something that should be treated.

But perhaps your symptoms are so general that they're not considered sufficient to justify a diagnosis of "active" myeloma, even if they create a lot of discomfort for you.

In any case, I hope your blood work tomorrow goes well and it ends up showing you won't need treatment for a long, long time, if ever.

[beckycraze]

Re: It started as "restless body syndrome"

by beckycraze on Thu Aug 22, 2013 4:52 am

You know Ricardo that is a good question. I'm not sure if I am smoldering or active. All my paperwork just says multiple myeloma. When I had my blood work in April and saw my oncologist the following week my calcium was high and they had me ready to start chemo the next day. They did another blood test before I left the office and called two hours later and said it was back down and they were going to hold off considering the side effects of the chemo. On one hand I was relieved. I am "medicine intolerant" and a lot of things don't agree with me. But, on the other I don't want to wait too long and run the risk of my kidneys shutting down. I am going to ask the doctor when I go on the 29th exactly what stage I am in. My rheumatologist said it was like an anvil hanging over my head and the rope is getting thinner.