My husband had been unwell for the last three years, he was admitted to hospital in June 2010 with a suspected heart attack, he was aged 64. After several tests it was discovered there was no heart disease, the consultant kept him in for three weeks until she got to the bottom of the problem. Turned out his bladder had completely failed and urine reflux was causing the chest pain. He is under the care of a good urologist and is now managing well. It was discovered in 2012 that his thyroid was toxic and he has had radiation therapy to destroy it, there was no cancer there. He suffers from siacita and has had it for years, in order to ascertain if maybe this was the cause of his bladder failure he was sent ot a Neurologist, he told us in September 12 that the M protein levels were up in his bloods, they were 7.5, he was having aches and pains, but as his thyroid was acting up he was putting it down to this. He had another blood and urine test in September and the level had rose to 8.7 and there were Bence Jones proteins in his urine. He was referred to a Haematologist and sent for a skeletal x ray. Since then we have had the appointment which is for the 1st October next, and no results of the xray, even though the radiologist was anxious to know when his next appointment was. In the meantime he has developed hip and leg pain and a lot of tummy pain. His last blood test was September 12, I am so frustrated and worried and of course I am on Google every day reading up on symptons. Anyone else out there left waiting as long on results.
Rosemary.
Forums
4 posts
• Page 1 of 1
Re: The Story So Far
Your husband certainly has been through a lot, Rosemary.
Can you tell us what country you are located in, since that might help us a bit in guiding you about what is normal and what is not normal. It sounds from what you've posted that you're probably not in the U.S., but it will matter a little bit if, say, you're in the UK or Canada (or, for that matter, Australia).
Also, could you let us know what units you're using for the M protein levels you're reporting. I'm guessing the units are g/liter (g/L), but it would be helpful to know for sure.
Regardless of where you are, it does seem very extreme for your husband to have to wait all the way until October 1 to have the results of his x-ray reviewed. It also seems like your husband should be scheduled to have a bone marrow biopsy given his M protein and Bence Jones measurement as well as the back pain he's been experiencing. The bone marrow biopsy, combined with the x-rays, will give a better sense of whether myeloma, or something else, is at the root of your husband's problems.
Can you tell us what country you are located in, since that might help us a bit in guiding you about what is normal and what is not normal. It sounds from what you've posted that you're probably not in the U.S., but it will matter a little bit if, say, you're in the UK or Canada (or, for that matter, Australia).
Also, could you let us know what units you're using for the M protein levels you're reporting. I'm guessing the units are g/liter (g/L), but it would be helpful to know for sure.
Regardless of where you are, it does seem very extreme for your husband to have to wait all the way until October 1 to have the results of his x-ray reviewed. It also seems like your husband should be scheduled to have a bone marrow biopsy given his M protein and Bence Jones measurement as well as the back pain he's been experiencing. The bone marrow biopsy, combined with the x-rays, will give a better sense of whether myeloma, or something else, is at the root of your husband's problems.
Re: The Story So Far
Hi Rosemary, I am sorry that you and your husband are going thru all of these health problems, without timely appointments with specialists!
For diagnosing myeloma, the CRAB symptoms are used: Calcium in excess in the blood; renal insufficiency; anemia; or bone damage. One needn't have all of the CRAB symptoms to get a diagnosis.
The sooner one was diagnosed with myeloma, the sooner that treatment could begin. As Ricardo mentioned, a bone marrow biopsy is also used for a diagnosis.
If your husband does have myeloma, the treatments available can work really well to bring down the 'M' spike (i.e. to destroy the myeloma plasma cells that are producing excess antibody proteins in a 'mono clonal' way. The mutant plasma cells are just producing one kind of protein, and far in excess of normal antibody production).
It certainly doesn't take long to get an X-ray read and I hope that you will be pro-active and get a sooner appointment arranged with the haematologist, and get an app't to review the test results soon. If this were to be myeloma, hopefully you could be referred to a haematological oncologist, or even a myeloma specialist. Please keep us posted..
For diagnosing myeloma, the CRAB symptoms are used: Calcium in excess in the blood; renal insufficiency; anemia; or bone damage. One needn't have all of the CRAB symptoms to get a diagnosis.
The sooner one was diagnosed with myeloma, the sooner that treatment could begin. As Ricardo mentioned, a bone marrow biopsy is also used for a diagnosis.
If your husband does have myeloma, the treatments available can work really well to bring down the 'M' spike (i.e. to destroy the myeloma plasma cells that are producing excess antibody proteins in a 'mono clonal' way. The mutant plasma cells are just producing one kind of protein, and far in excess of normal antibody production).
It certainly doesn't take long to get an X-ray read and I hope that you will be pro-active and get a sooner appointment arranged with the haematologist, and get an app't to review the test results soon. If this were to be myeloma, hopefully you could be referred to a haematological oncologist, or even a myeloma specialist. Please keep us posted..
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: The Story So Far
Thank you for your kind comments, tips and advice. I have been very busy since my last post. Finally got results of Xray yesterday, there is only one lesion on one rib, but as these xrays were taken nearly six months ago and the aches and pains are on the move and getting more intense, our GP has opted to do an electrophenosis blood test to morrow and repeat x rays as appointment with haematologist is not until 1st Ocotber. One good bit of news is thyroid levels are settled and medication levels are maintaining normal thyroid function, Our GP informed my husband yesterday that so far he has two markers for multiple myeloma and gave him a good low down on its effects etc., but said that the xray result and protein levels alone do not make a diagnosis, that the haematologist would make the diagnosis based on her findings from bone marrow biopsy etc., He had bloods taken two weeks ago for Endocrinologist, his kidney function was fine and his blood count, so a good sign I think. It is unusual for only one bone to be affected from multiple myeloma.
What a great site, people's experiences with multiple myeloma so encouraging.
Thanks again.
Rosemary.
PS We live in Ireland.
What a great site, people's experiences with multiple myeloma so encouraging.
Thanks again.
Rosemary.
PS We live in Ireland.
4 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories