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newbie
Hello from Atlanta. I was diagnosed in 2008 with high risk smoldering myeloma. I have been stable and have a wonderful specialist I see every 6 weeks. My question is why do doctors not recognize that we have real symptoms associated with our myeloma? Extreme fatigue, achiness,sore muscles,night sweats,headaches and just a generalized feeling of being sick all the time. I have read on other sights that people have similar complaints including neuropathy and the consensus is always that their doctors say it is not related to the SMM. I am not anemic so that doesn't explain it. Why can't is just be recognized that this beast in all of us is causing us to feel bad?
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SMMBadella
Re: newbie
Hi SMM
Are your symptoms fatigue/night sweats/neuropathy occurring with therapy for SMM or without?
Are you on a drug regimen?
Are your symptoms fatigue/night sweats/neuropathy occurring with therapy for SMM or without?
Are you on a drug regimen?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: newbie
Hi SMM,
I think you are right.
Many of us have those symptoms but we do not know they have any meaning.
So glad to hear you speak of them. I had fatigue and night sweats..no neuropathy. But I had no clue those were due to myeloma being present. I thought the fatigue was aging and that the night sweats were menopause. sigh
That is the insidious nature of myeloma, the symptoms are such that they can be attributed to so many other variables and we do not know that it is actually a disease.
You sound like a good candidate for Dr. Langren and his SMM study. TerryH and Art can probably share more with you about that.
I think you are right.
Many of us have those symptoms but we do not know they have any meaning.
So glad to hear you speak of them. I had fatigue and night sweats..no neuropathy. But I had no clue those were due to myeloma being present. I thought the fatigue was aging and that the night sweats were menopause. sigh
That is the insidious nature of myeloma, the symptoms are such that they can be attributed to so many other variables and we do not know that it is actually a disease.
You sound like a good candidate for Dr. Langren and his SMM study. TerryH and Art can probably share more with you about that.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: newbie
SMM
I don't really have any symptoms other than possibly some fatigue. I've noticed it over the last two years but just brushed it off as getting older.I was diagnosed on 12/16/11. I'm not sure if it is related. I am fine during the day but once I sit down in the evening it's lights out. I also have a much harder time getting up early for work. I do have aches and pains but don't think they are related as I have a pretty physical job.
I agree with suzierose. I am going to see Dr Landgren for the first time next week on Feb, 2. I spoke to him once and he is an amazing individual. I called him and left a message. He called me back shortly and we spoke for almost an hour. His team and mainly Marcia (she is the one I have been making arrangements with) his Nurse is also amazing. They truly understand what you are experiencing and are there to help you. I think I have SMM even though I was told that I had active multiple myeloma by one Dr. And the other Dr. I am currently seeing is on the fence. The only CRAB criteria in question is my Anemia which is only 12.6 so even though that is low for someone of my age it still does not meet the suggested levels. They have reviewed all my results at NIH and seem pretty confident as well. As I said I have not seen them yet but once you talk to them I think you too will be convinced. Terryl1 is the person that convinced me to go and I know he is seeing them as well. I Plan on taking part in their Natural History study. I would be happy to let you know how it goes. If I am eligible for the study they will reimburse for Travel, Accomodations and food as well. Maybe not full reimbursement but still well worth the trip. I am counting the days!
Good Luck to you
Art
I don't really have any symptoms other than possibly some fatigue. I've noticed it over the last two years but just brushed it off as getting older.I was diagnosed on 12/16/11. I'm not sure if it is related. I am fine during the day but once I sit down in the evening it's lights out. I also have a much harder time getting up early for work. I do have aches and pains but don't think they are related as I have a pretty physical job.
I agree with suzierose. I am going to see Dr Landgren for the first time next week on Feb, 2. I spoke to him once and he is an amazing individual. I called him and left a message. He called me back shortly and we spoke for almost an hour. His team and mainly Marcia (she is the one I have been making arrangements with) his Nurse is also amazing. They truly understand what you are experiencing and are there to help you. I think I have SMM even though I was told that I had active multiple myeloma by one Dr. And the other Dr. I am currently seeing is on the fence. The only CRAB criteria in question is my Anemia which is only 12.6 so even though that is low for someone of my age it still does not meet the suggested levels. They have reviewed all my results at NIH and seem pretty confident as well. As I said I have not seen them yet but once you talk to them I think you too will be convinced. Terryl1 is the person that convinced me to go and I know he is seeing them as well. I Plan on taking part in their Natural History study. I would be happy to let you know how it goes. If I am eligible for the study they will reimburse for Travel, Accomodations and food as well. Maybe not full reimbursement but still well worth the trip. I am counting the days!
Good Luck to you
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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