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Current diagnosis is Amyloidosis and multiple myeloma

Posted by jan52241 @jan52241, Jun 12, 2016

I was diagnosed with myeloma quite by chance at a routine neuro appointment a year ago. My current diagnosis is Amyloidosis and multiple myeloma I have no one who understands this condition to talk to. I have peripheral neuropothay on my left leg and toes. I have had every test imaginable in the past year to monitor this condition. I would like some advice and what to expect in the future.

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Thomas L. Cox | @tlcox49 | Jul 14, 2018
In reply to @kelseydm "Hi @jan52241. Welcome to Connect! I'm sorry to hear you have felt alone in this diagnosis..." + (show)
@kelseydm

Hi @jan52241. Welcome to Connect! I'm sorry to hear you have felt alone in this diagnosis thus far, but so glad that you found our community.

I'd like to introduce you to @gaetanche @mvpdda and @tmousetis who also have amyloidosis. Hopefully they will join this discussion thread and share their experiences about treatment and managing symptoms.

You may also want to look at this thread on AL Amyloidosis: https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/ and this one on neuropathy: https://connect.mayoclinic.org/discussion/neuropathy-pain-in-my-left-foot-and-lower-left-legs/.

In the meantime, can you tell us a bit more about yourself. What, if any, symptoms are you experiencing? What treatments are you trying?

Also, I just wanted to let you know i'm editing the title of the thread to make it more searchable and hopefully get more activity.

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It is in remission. There is an ever so slight increase as time goes by, but nothing to be concerned over at this time of it returning. The main concern is the Kidneys. I am still followed by the wonderful team work of the MAYO Dr's for the Heart & Kidneys. There may be a chance of dialysis in the future, that is why my son and I are trying to get our traveling done before it must be curtailed. But keeping track of all the refills and restraints put on some refills our timing must be paid attention to. Again but, the damages done are irreversable is a problem. I love those who have assisted me in surviving past that 6 month time frame.

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