I haven’t really seen much mention of familial amyloidosis and neuropathy mentioned. I have severe neuropathy – went from cane to walker to now a wheelchair. My legs are so weak and they feel like tree stumps. Hands and arms are pretty much like that as well. My type has not been 100% confirmed yet. Hopefully in 3 weeks they will have more answers – a few more tests this week and waiting on biopsy results that were sent to the Mayo.
Anyway, my question is, has anyone undergone treatment for the familial type and had any reversal or improvement with their neuropathy?
If anyone wants to read my medical travels blog – here’s the link. Pretty much sums up my history over the past 3 years.
http://www.blogger.com/profile/16028800663750030420
Thanks in advance.
Ken
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Familial Amyloidosis and Neuropathy
- By kennethpletz
- Posted August 2, 2009 at 8:34 pm · 2 replies
- In Familial (hereditary) and TTR amyloidosis
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- By RON-C
- Posted August 4, 2009 at 8:00 am
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Ken
I guess first of all the correct diagnosis is necessary for the proper treatment. As I mentioned before, I had severe feet pain. The only time the pain would seem to go away was when I would finally fall asleep. So thats what I did alot of-sleeping. In my case I had a hard time walking because of the feet pain, not because of the neuropathy. I know I was going down hill fast, and not being able to do the things I always had enjoyed made it worse.For me the liver transplant was a miracle. I am so blessed that I went to the Mayo and got the correct diagnosis, and was able to get a transplant as soon as I did.The feet pain went away immediately after surgery. The neuropathy in my legs has not gotten any worse. The numbness in my hands did get better. I still have other side effects I deal with daily. But I am able to work full time. I got back into archery, which I always really enjoyed. I spend as much time in the outdoors as I can, hunting and fishing etc.
- By joan45
- Posted August 7, 2009 at 2:39 pm
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Ken:
I did reply to your previous post but do not know why you did not recieve it. Anyway, yes my husband has Familial Amyloidosis Polyneuropathy. Was not properly diagnosed for at least 3 1/2 years. He is too old for a liver transplant (he was 64 when we went to Mayo) They said 50 years or younger. He is now in a clinical trial which has stopped the progression and I might say better now than the 3 1/2 years he went thru so much. You do need the mutation in order to know the right type of amyloidosis. Wondered how they came to the conclusion of FAP if they do not have a confirmed mutation.
Hope you get some answers soon.
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