Anyone here with amyloidosis? I've been followed for 16 years for IgM MGUS and was doing great with strength-training, aerobics, zumba and gardening. In the last year, I've been hit with three pathologic spinal compression fractures, two debilitating bouts of bronchitis, two serious UTIs, and my 3rd case of shingles, which was still causing new eruptions after 10 days on acyclovir and required another 10 days. Also diagnosed this week with peripheral neuropathy and spinal stenosis.
Now I'm being tested for amyloidosis, with visits to neurology (brain MRI has been ordered), ophthalmologist, G.I., spine surgeon, and fat pad aspiration.
Anyone have any experience with this?
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Re: Anyone here with amyloidosis?
Hi Sara,
Sorry to hear about your struggles. I was diagnosed with multiple myeloma and amyloidosis in December 2009.
I had a fat pad aspiration to diagnose. The only other place amyloid was found was my skin. I had yellow coloration in my mouth and other locations on my body. My eyes would bruise with just a whisker of touch on my eyelashes. Nothing in my organs or G.I. tract.
Like with multiple myeloma, it is wise to see a specialist regarding this disease. I don't know if you would call it rare, but it is not common.
I hope you aspiration comes back negative. Best wishes to you.
Deb
Sorry to hear about your struggles. I was diagnosed with multiple myeloma and amyloidosis in December 2009.
I had a fat pad aspiration to diagnose. The only other place amyloid was found was my skin. I had yellow coloration in my mouth and other locations on my body. My eyes would bruise with just a whisker of touch on my eyelashes. Nothing in my organs or G.I. tract.
Like with multiple myeloma, it is wise to see a specialist regarding this disease. I don't know if you would call it rare, but it is not common.
I hope you aspiration comes back negative. Best wishes to you.
Deb
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eclipsefarm
Re: Anyone here with amyloidosis?
Sarah,
I was diagnosed with AL amyloidosis in 2012, and had an auto stem cell transplant at Boston Medical Center. At that time, there was no evidence of myeloma.
Then in 2014, I developed myeloma. I've been on chemotherapy since.
I'll be following along with your progress. Keep us updated if you have the time and energy.
Just one note - AL amyloidosis does not affect the brain, as the light chains/ amyloid fibrils are too large to cross the blood/ brain barrier.
Tracy
I was diagnosed with AL amyloidosis in 2012, and had an auto stem cell transplant at Boston Medical Center. At that time, there was no evidence of myeloma.
Then in 2014, I developed myeloma. I've been on chemotherapy since.
I'll be following along with your progress. Keep us updated if you have the time and energy.
Just one note - AL amyloidosis does not affect the brain, as the light chains/ amyloid fibrils are too large to cross the blood/ brain barrier.
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Anyone here with amyloidosis?
Hi Sarah,
I am glad Tracy replied to your posting, because she is one of the forum members with amyloidosis who I would have pointed you to.
Another forum member who has amyloidosis is KimT. She regularly puts all of us here in the forum to shame with the stories of the marathons she is running regularly just months after her stem cell transplant. You can read all the details of her transplant in this forum thread:
"KimT's Stem Cell Transplant (Stanford, Inpatient)" (started July 28, 2014)
Good luck!
I am glad Tracy replied to your posting, because she is one of the forum members with amyloidosis who I would have pointed you to.
Another forum member who has amyloidosis is KimT. She regularly puts all of us here in the forum to shame with the stories of the marathons she is running regularly just months after her stem cell transplant. You can read all the details of her transplant in this forum thread:
"KimT's Stem Cell Transplant (Stanford, Inpatient)" (started July 28, 2014)
Good luck!
Re: Anyone here with amyloidosis?
Hey there! And I just happened to be hanging out here tonight!
Yes, I was diagnosed with amyloidosis in July of 2013. After my bone marrow biopsy, I was told I had multiple meyloma as well, but I call it my 'minor'. I had 40% plasma cells but no symptoms of multiple myeloma other than that.
I'm in remission now after chemo and an autologous stem cell transplant in August of 2014. Things are good. I am on no treatment now.
And since Cheryl brought it up ...
I was fortunate enough to run a marathon fast enough to qualify for Boston in May of 2015. I am in training now and will be running it on April 18th. I am very excited.
But I also feel blessed. When I was first diagnosed, I thought it was all over. I'm not sure what is around the next corner, so I just try to do what I can, while I can.
Yes, I was diagnosed with amyloidosis in July of 2013. After my bone marrow biopsy, I was told I had multiple meyloma as well, but I call it my 'minor'. I had 40% plasma cells but no symptoms of multiple myeloma other than that.
I'm in remission now after chemo and an autologous stem cell transplant in August of 2014. Things are good. I am on no treatment now.
And since Cheryl brought it up ...
I was fortunate enough to run a marathon fast enough to qualify for Boston in May of 2015. I am in training now and will be running it on April 18th. I am very excited.
But I also feel blessed. When I was first diagnosed, I thought it was all over. I'm not sure what is around the next corner, so I just try to do what I can, while I can.
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: Anyone here with amyloidosis?
KimT,
Great to hear you are doing well. Your post was inspirational, as usual.
Mark
Great to hear you are doing well. Your post was inspirational, as usual.
Mark
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Mark11
Re: Anyone here with amyloidosis?
Good luck in the Boston Marathon, Kim! That is no small achievement for anyone to run, and to qualify for.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Anyone here with amyloidosis?
Thank you so much! I plan to be thinking of all my with friends with amyloidosis and multiple myeloma while I am running this race!
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: Anyone here with amyloidosis?
Hi Sarah123,
I have amyloidosis. Symptoms began in 2008 shortly after I had a flu and then appendicitis with appendectomy. My legs became weak and I developed carpal tunnel and had CTR on both wrists. Doctors could not figure out what was wrong with me.
Bone and muscle aches got worse with time and I was sent to rheumatologist in 2010 who said I had polymyalgia rheumatica (PMR) because I had a high sed rate and hemolytic anemia. Prednisone gave me some relief. In 2013 my feet and left knee were swelling and I was limping. I was short of breath, fatigued and in quite a bit of pain night and day. Still no one could figure out what was wrong.
When my femur fractured stepping into the house one day, I was sent to Boston for surgery where tests and biopsies showed I had multiple myeloma and amyloidosis and the fracture was due to plasmacytoma (from multiple myeloma) that broke through the bone.
Amyloidosis and myeloma are rather rare and it is not something that a rural doctor knows anything about. You should go to a doctor who specializes in amyloidosis. Amyloidosis and myeloma can present as any number of symptoms. It can get very complicated. Even the specialists are learning and updating their research on these diseases every year.
Boston has an amyloidosis clinic at Boston Medical Center where they do a thorough 3-day screening; patients come from all over the world to get a second opinion there. There are also some myeloma doctors in big cities who specialize in myeloma and amyloidosis (Dana Farber has such doctors). You really should see a specialist if you aren't getting answers.
Best wishes to you.
I have amyloidosis. Symptoms began in 2008 shortly after I had a flu and then appendicitis with appendectomy. My legs became weak and I developed carpal tunnel and had CTR on both wrists. Doctors could not figure out what was wrong with me.
Bone and muscle aches got worse with time and I was sent to rheumatologist in 2010 who said I had polymyalgia rheumatica (PMR) because I had a high sed rate and hemolytic anemia. Prednisone gave me some relief. In 2013 my feet and left knee were swelling and I was limping. I was short of breath, fatigued and in quite a bit of pain night and day. Still no one could figure out what was wrong.
When my femur fractured stepping into the house one day, I was sent to Boston for surgery where tests and biopsies showed I had multiple myeloma and amyloidosis and the fracture was due to plasmacytoma (from multiple myeloma) that broke through the bone.
Amyloidosis and myeloma are rather rare and it is not something that a rural doctor knows anything about. You should go to a doctor who specializes in amyloidosis. Amyloidosis and myeloma can present as any number of symptoms. It can get very complicated. Even the specialists are learning and updating their research on these diseases every year.
Boston has an amyloidosis clinic at Boston Medical Center where they do a thorough 3-day screening; patients come from all over the world to get a second opinion there. There are also some myeloma doctors in big cities who specialize in myeloma and amyloidosis (Dana Farber has such doctors). You really should see a specialist if you aren't getting answers.
Best wishes to you.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Anyone here with amyloidosis?
Kim T.
Where were your amyloid deposits? Thanks.
J
Where were your amyloid deposits? Thanks.
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
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