I am a MGUS patient that has recently been entered in the Natural History Study at NIH. I had all the work up and still have several questions.
After reading a lot of info on this site, I seem more confused then ever about all my symptoms. I seem to have just as much or even more symptoms then most of the myeloma patients here. Which is why I want to ask more questions about my tests.
I have always had elevated WBC without infections. Elevated alkaline phosphate with bone pain in upper arms, upper legs and back. Numbness, vibrations in leg. Low grade fevers and some night sweats. Upper arm and leg weakness, trouble going up stairs. I always have neutrophilla and myeloid precursers with left shift. Abnormal PET/CT whole body uptake demonstrating focus on uptake on leg musculature. Yet low m-spike and 8-10 % plasma cells.
Also, where does it supply you with the info on the tests to what risk you are considered? Why would a MGUS patient have so many symptoms? I am not on any treatments. I also have a abnormal K/L ratio.
Thanks for your help!
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Re: Systematic MGUS
Hi Majolica, I am in the same study as you at the NIH, although I am at a high risk for progression smolderer. If you have any questions, call Dr. Landgren or email him. He is not only one of the world's leading experts on myeloma, he is a true and courteous gentleman and has never failed to return my email or phone call. You are now his patient ... call him. He takes pride in his work and I am sure he will be happy to review your case.
I believe you are in very good hands. Others on this site are also in his study or under his care and we pretty much universally respect him and consider him to be one helluva guy.
Good luck. Terry
I believe you are in very good hands. Others on this site are also in his study or under his care and we pretty much universally respect him and consider him to be one helluva guy.
Good luck. Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Systematic MGUS
Hi Terry,
Thanks so much for taking the time to respond. I didn't even know you can call or email them. I assumed I would be imposing to ask questions outside the study.
Geeze, what is scaring me, is I noticed I wrote systematic on the subject line. I did not mean to. I did mention to them about my memory issues. I have been noticing I have been writing down words different then I meant to. I seem to be forgetting more and transposing my words.
Anyone out there with these odd ball symptoms as well? I am sure tired of feeling crappy. Love to have my old self back for a while. I sure hope we see a cure in the future.
Hope to meet you at the NIH sometime. Be well!
Thanks so much for taking the time to respond. I didn't even know you can call or email them. I assumed I would be imposing to ask questions outside the study.
Geeze, what is scaring me, is I noticed I wrote systematic on the subject line. I did not mean to. I did mention to them about my memory issues. I have been noticing I have been writing down words different then I meant to. I seem to be forgetting more and transposing my words.
Anyone out there with these odd ball symptoms as well? I am sure tired of feeling crappy. Love to have my old self back for a while. I sure hope we see a cure in the future.
Hope to meet you at the NIH sometime. Be well!
Re: Systematic MGUS
Majolica,
I have to agree with Terry. I am also participating in their Smoldering Study. I was just there less than 2 weeks ago (thanks to Terry)
. Do not hesitate to contact them, Dr Landgren gave me his business card with his cell # on it and told me to call him anytime. He truly is a kind and courteous gentleman.
It's funny you mention some of these things, I too jumble my words sometimes and have some trouble writing sometimes. I never heard about these as any symptoms. I never even made a connection. Something to think about?? I also have some mild pain in my upper back and ribs. Going for an MRI this week.
Good Luck and keep us posted.
Art
I have to agree with Terry. I am also participating in their Smoldering Study. I was just there less than 2 weeks ago (thanks to Terry)
. Do not hesitate to contact them, Dr Landgren gave me his business card with his cell # on it and told me to call him anytime. He truly is a kind and courteous gentleman. It's funny you mention some of these things, I too jumble my words sometimes and have some trouble writing sometimes. I never heard about these as any symptoms. I never even made a connection. Something to think about?? I also have some mild pain in my upper back and ribs. Going for an MRI this week.
Good Luck and keep us posted.
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Systematic MGUS
Hi Art,
I am just going to wait to ask questions in July ... if I remember the questions. I was like a deer in headlights on my visit. For the life of me could not think of all my symptoms to mention. I left just as confused as when I went in. No answers where provided at the time to my abnormal labs, PET/CT results.
Could you provide me his email or cell #? I am sure its won't matter if I wait to talk to them in 6 months. Take care.
I am just going to wait to ask questions in July ... if I remember the questions. I was like a deer in headlights on my visit. For the life of me could not think of all my symptoms to mention. I left just as confused as when I went in. No answers where provided at the time to my abnormal labs, PET/CT results.
Could you provide me his email or cell #? I am sure its won't matter if I wait to talk to them in 6 months. Take care.
Re: Systematic MGUS
I get caught up and forget too. Have to write that stuff down. They should have followed up with you after your visit? I would not hesitate to contact them. Maybe it will ease your mind. I'll send you his email and his nurses direct line via a private message. Don't have his cell with me.
Good Luck
Art
Good Luck
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Systematic mgus
Is the study for smoldering myeloma still open? How does one get involved? I always wondered why no one has contacted me for a study as I was on 42 when diagnosed.
Re: Systematic MGUS
Hi Silly Girl, the study, to my knowledge, is still open. Contact Dr. Landgren's office at the NIH in Bethesda, MD. You can email his head nurse, Mary Ann Yancey, and I am sure she will contact you shortly. Just go to the NIH/NCI site for numbers and email addresses. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Systematic MGUS
Hi Silly Girl,
I, like Terry, am taking part in that study. Terry is the one who convinced me to contact them. Do it, you won't be disappointed! I called Dr Landgren originally and left him a message. He called me back very promptly and I was not even a patient at that point.
They do have clinical visits on Tuesdays and Thursdays, so those may not be good days. You will be surprised and won't regret it. He is a humble, caring, and kind man.
Best of Luck
Art
I, like Terry, am taking part in that study. Terry is the one who convinced me to contact them. Do it, you won't be disappointed! I called Dr Landgren originally and left him a message. He called me back very promptly and I was not even a patient at that point.
They do have clinical visits on Tuesdays and Thursdays, so those may not be good days. You will be surprised and won't regret it. He is a humble, caring, and kind man.
Best of Luck
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
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