I was finally diagnosed correctly with multiple myeloma after having a plasmacytoma that broke my femur. I had been sick for years and on prednisone and under the care of a rhematologist who believed I had polymyalgia rheumatica, but it was not that at all.
Any others who were misdiagnosed for years?
Forums
7 posts
• Page 1 of 1
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Diagnosed after polymyalgia rheumatica misdiagnosis
Hi Melissa,
Welcome. I'm sorry to hear about your situation. I was only misdiagnosed for months. My regular doctor at the time saw anemia, low calcium and low sodium . At one point she suggested I was drinking too much water ! When I went in complaining of rib and back pain, her physician's assistant prescribed Motrin and sent me on my way. It was not until my doctor was on vacation that proper tests were done by her partner. He looked for elevated proteins and sent me to a hematologist. He's now my doctor. I don't know where I'd be without him.
It was later explained to me that my low calcium and sodium were probably showing that way because the ratio was off compared to extremely high proteins.
Good luck and best wishes in this journey.
Welcome. I'm sorry to hear about your situation. I was only misdiagnosed for months. My regular doctor at the time saw anemia, low calcium and low sodium . At one point she suggested I was drinking too much water ! When I went in complaining of rib and back pain, her physician's assistant prescribed Motrin and sent me on my way. It was not until my doctor was on vacation that proper tests were done by her partner. He looked for elevated proteins and sent me to a hematologist. He's now my doctor. I don't know where I'd be without him.
It was later explained to me that my low calcium and sodium were probably showing that way because the ratio was off compared to extremely high proteins.
Good luck and best wishes in this journey.
-
Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Diagnosed after polymyalgia rheumatica misdiagnosis
Right now I am under care in Boston and on Velcade and dex 20mg and Cytoxan [cyclophosphamide]. Another plasmacytoma was found in the tibia in the same leg as broken femur. I just finished radiation to shrink this tumor.
I am tired of being in a wheel chair and hopping around on my right leg with a walker. It gets frustrating. The doc may add Revlimid depending how blood counts look. From what I've read about stem cell transplantation, I am frightened of it, so don't know if I will ever choose that route.
I will soon have an evaluation at Boston medical center amyloidosis clinic, as I have amyloidosis of the heart and the docs at Beth Israel suggest I get an evaluation at bmc.
I am tired of being in a wheel chair and hopping around on my right leg with a walker. It gets frustrating. The doc may add Revlimid depending how blood counts look. From what I've read about stem cell transplantation, I am frightened of it, so don't know if I will ever choose that route.
I will soon have an evaluation at Boston medical center amyloidosis clinic, as I have amyloidosis of the heart and the docs at Beth Israel suggest I get an evaluation at bmc.
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Diagnosed after polymyalgia rheumatica misdiagnosis
I had trouble getting a proper diagnosis. I just kept getting sicker as my myeloma progressed. When I was finally diagnosed my doctor said for sure I'd had active myeloma for two, maybe three years, based on symptoms and my high M-spike.
I had a possible multiple sclerosis diagnosis, but the MRI was not showing MS, so mostly I was getting periodic follow ups with an arrogant doctor who was trying to convince me it was all in my head, and I was likely just young and stressed out. My M-spike was so high it was affecting my nerves.
I was finally diagnosed in the ER after a couple years of bad health, multiple issues, and seeing specialist after specialist. For me, a big issue was my age, as I was around 30, so multiple myeloma was not really on the list of things to check for.
I had a possible multiple sclerosis diagnosis, but the MRI was not showing MS, so mostly I was getting periodic follow ups with an arrogant doctor who was trying to convince me it was all in my head, and I was likely just young and stressed out. My M-spike was so high it was affecting my nerves.
I was finally diagnosed in the ER after a couple years of bad health, multiple issues, and seeing specialist after specialist. For me, a big issue was my age, as I was around 30, so multiple myeloma was not really on the list of things to check for.
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Diagnosed after polymyalgia rheumatica misdiagnosis
There was a Japanese case report recently in the medical literature about exactly this sort of situation. Here's the abstract, citation, and link:
Abstract: A 50-year-old Japanese man was referred to our department with pain in his limb joints persisting for 3 months. Although his joints showed no redness, swelling or tenderness, he had a limited range of motion of his hip and shoulder joints, suggesting a diagnosis of polymyalgia rheumatica (PMR). However, his relatively young age and subacute course along with the absence of morning stiffness made the diagnosis uncertain. We performed positron emission tomography/CT, which revealed 18F-fluorodeoxyglucose uptake in bilateral upper and lower joints, consistent with PMR. There was also uptake by a sacral tumour, suggesting a diagnosis of paraneoplastic syndrome. Immunoglobulin A-κ type M protein was detected in serum and bone marrow aspiration/biopsy identified diffuse proliferation of atypical plasma cells, confirming a diagnosis of multiple myeloma. The patient received chemotherapy, which alleviated his limb pain, and achieved stringent complete remission after autologous peripheral blood stem cell transplantation.
Shingo Suzuki, Masatomi Ikusaka, Masahito Miyahara, Kiyoshi Shikino, "Positron emission tomography findings in a patient with multiple myeloma of polymyalgia rheumatica-like symptoms caused by paraneoplastic syndrome", BMJ Case Rep. 2014 Apr 9;2014
http://casereports.bmj.com/content/2014/bcr-2013-203326.abstract
I checked the literature a bit more in depth and there are a number of papers about how polymyalgia rheumatica can be a manifestation of, or misdiagnosis of, other diseases. But I din't find specific mentions of multiple myeloma. Here's a paper, for example, that looked at 200 cases of polymyalgia rheumatica and found 16 other diseases present, but none of them were multiple myeloma: http://tinyurl.com/mtbvb4m
The authors do mention, however, that multiple myeloma is a disorder that can mimic polymyalgia rheumatica.
Abstract: A 50-year-old Japanese man was referred to our department with pain in his limb joints persisting for 3 months. Although his joints showed no redness, swelling or tenderness, he had a limited range of motion of his hip and shoulder joints, suggesting a diagnosis of polymyalgia rheumatica (PMR). However, his relatively young age and subacute course along with the absence of morning stiffness made the diagnosis uncertain. We performed positron emission tomography/CT, which revealed 18F-fluorodeoxyglucose uptake in bilateral upper and lower joints, consistent with PMR. There was also uptake by a sacral tumour, suggesting a diagnosis of paraneoplastic syndrome. Immunoglobulin A-κ type M protein was detected in serum and bone marrow aspiration/biopsy identified diffuse proliferation of atypical plasma cells, confirming a diagnosis of multiple myeloma. The patient received chemotherapy, which alleviated his limb pain, and achieved stringent complete remission after autologous peripheral blood stem cell transplantation.
Shingo Suzuki, Masatomi Ikusaka, Masahito Miyahara, Kiyoshi Shikino, "Positron emission tomography findings in a patient with multiple myeloma of polymyalgia rheumatica-like symptoms caused by paraneoplastic syndrome", BMJ Case Rep. 2014 Apr 9;2014
http://casereports.bmj.com/content/2014/bcr-2013-203326.abstract
I checked the literature a bit more in depth and there are a number of papers about how polymyalgia rheumatica can be a manifestation of, or misdiagnosis of, other diseases. But I din't find specific mentions of multiple myeloma. Here's a paper, for example, that looked at 200 cases of polymyalgia rheumatica and found 16 other diseases present, but none of them were multiple myeloma: http://tinyurl.com/mtbvb4m
The authors do mention, however, that multiple myeloma is a disorder that can mimic polymyalgia rheumatica.
Re: Diagnosed after polymyalgia rheumatica misdiagnosis
TerryH you do wonderful research. It sure is frightening that many diseases can mimic PMR. I should send the articles to my old rheumatologist. She was so certain I had PMR, nothing could sway her in her thinking. I think doctors need to have an open mind that patients may have or develop different diseases than they first figured. Medicine is not an exact science.
Unfortunately, I think multiple myeloma began after I had a terrible flu in March of 2008. I had never been so ill in all my adult life. In the same month, right after I recovered from the flu, I developed appendicitis and had an appendectomy. After I recovered from that, the doctors at the hospital had requested I see my PCP to update my vaccinations, so I saw my PCP and got a DPT shot. I never again truly felt well.
It was after that I began to feel weak, achy, and began to notice strange symptoms. My blood work showed high sed rate and anemia that would not improve. When I ended up at the rheumatologist three years later, the prednisone brought the ESR rate down, but the anemia got worse and worse. I also developed shortness of breath and swelling of ankles and more difficulty with long walks and exertion. This I now know was symptoms of amyloidosis of the heart.
One can never change the past, so I guess there is no sense looking back, but we can learn from the past and I hope as medicine advances, doctors will begin to look at the possibility that the patient sitting before them may have a rare disorder or disease.
Unfortunately, I think multiple myeloma began after I had a terrible flu in March of 2008. I had never been so ill in all my adult life. In the same month, right after I recovered from the flu, I developed appendicitis and had an appendectomy. After I recovered from that, the doctors at the hospital had requested I see my PCP to update my vaccinations, so I saw my PCP and got a DPT shot. I never again truly felt well.
It was after that I began to feel weak, achy, and began to notice strange symptoms. My blood work showed high sed rate and anemia that would not improve. When I ended up at the rheumatologist three years later, the prednisone brought the ESR rate down, but the anemia got worse and worse. I also developed shortness of breath and swelling of ankles and more difficulty with long walks and exertion. This I now know was symptoms of amyloidosis of the heart.
One can never change the past, so I guess there is no sense looking back, but we can learn from the past and I hope as medicine advances, doctors will begin to look at the possibility that the patient sitting before them may have a rare disorder or disease.
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Diagnosed after polymyalgia rheumatica misdiagnosis
Melpen asked:
I was diagnosed with PMR about five years ago, but I had also been diagnosed with MGUS which evolved into "smoldering" myeloma two years ago. I have been on and off prednisone during much of this time and was diagnosed with diabetes within weeks of the last time I was put back on a 15 mg daily dose of prednisone. My most significant symptoms are extreme fatigue and daily pain.
My IgG is hovering around 1900 and my kappa / lambda free light chain ratio is currently 2.53. So far, my hematologist / oncologist is not recommending any treatment, as he still believes that much of my pain is PRM-related. It's been more than two years since I had a bone marrow biopsy, but since much of my bloodwork is trending the wrong direction, he may repeat that procedure soon.
Never feeling very well gets frustrating, but a forum such as this is a real encouragement.
Any others who were misdiagnosed for years?
I was diagnosed with PMR about five years ago, but I had also been diagnosed with MGUS which evolved into "smoldering" myeloma two years ago. I have been on and off prednisone during much of this time and was diagnosed with diabetes within weeks of the last time I was put back on a 15 mg daily dose of prednisone. My most significant symptoms are extreme fatigue and daily pain.
My IgG is hovering around 1900 and my kappa / lambda free light chain ratio is currently 2.53. So far, my hematologist / oncologist is not recommending any treatment, as he still believes that much of my pain is PRM-related. It's been more than two years since I had a bone marrow biopsy, but since much of my bloodwork is trending the wrong direction, he may repeat that procedure soon.
Never feeling very well gets frustrating, but a forum such as this is a real encouragement.
-
RogerAN - Name: RogerAN
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2013
- Age at diagnosis: 70
7 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories