Neuropathy

[ziad_okeil]

Hello George,

Thanks a lot for the advice. I know I should not delay it any longer but I am just psychologically not ready for it 😉

Thank you again

Regards,

[Lesley]

Lovely to have this site and be able to 'chat' to people 'in the know' where Amy is concerned! So many people are so ignorant of it  -  ignorant may be a word that is quite strong but it sums up how I feel constantly battling to relate the story to people when they ask and say 'but you're cured now' - I wish - Grrrr

Lesley

[Miriam Vered]

whatever Amy(loid) it is, are the symptoms still the same? Maybe Miriam could answer that one? I know Amy manifests itself in so many different ways and hurts people in different ways too.

Sorry it's taken me a while to answer Lesley's question, but here you go:
Amyloidosis can be associated with a very wide variety of symptoms, depending on which organs are affected by amyloid deposits. As George said a bit earlier in this discussion, people with the same type of amyloidosis may have different affected organs and experience different symptoms. Both AL and ATTR amyloidosis can affect the nerves causing the symptoms of neuropathy which Lesley, George and Ziad all unfortunately experience.

[patpinchin]

I have a form of neuropathy too, diagnosed as "chronic hypersensitivity of the palatal nerves damaged by amyloid infiltration". This was made on the basis of PET imaging.  I do not have pain in my palate but relentlessly ferocious salty taste sensations which are also very sore. Excruciating and incapacitating making conversation unsustainable as it increases the intensity of my distress as does eating and most activities. In 13 years no-one has been able to find me symptom control. Thank-you Lesley and Ziad for your compliments. You are both wonderful friends to me. 

[patpinchin]

Do you know if this treatment is available here Miriam and if it has been used effectively or otherwise for Amyloidosis patients with peripheral neuropathy?

http://l.facebook.com/l/ZAQGZ6WNh/sharing.mayoclinic.org/discussion/breaking-away-from-the-pain-with-the-help-of-the-scrambler/?linkId=12478675

I note there is also a clinical trial running in the US.

https://clinicaltrials.gov/ct2/show/NCT01347723?term=Loprinzi&rank=2

[Miriam Vered]

Sorry Pat, I don't know about this. Just from an internet search it doesn't seem to be available in the UK. I asked Professor Hawkins and he doesn't know anything about it.

[patpinchin]

Thanks for enquiring Miriam. 

[Martin]

Hi all, my wife Cheryl has AL Amy with all the same symptoms, cold feet and legs, wakes up most nights with calf cramps. Cheryl loves her feet massaged most days, which I do when possible, in fact every time she catches me sitting down I hear her voice ' any chance of a foot rub' bless her. I suppose we have to keep positive and do what we can and help each other cope.

[Lesley]

HI Martin

Great to see you on here. I  hope Cheryl is ok. She has a lovely smile. You do so much for Amyloid in general. Just wanted to say hello.
Lesley