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General Discussions / Low potassium, sodium and phosphorus diets
« Last Post by Chris Curry on October 12, 2019, 01:30:55 PM »

Hi
Hi Everyone ................  I was diagnosed with AL Amyloidosis in November 1994.  I had amyloid in my kidneys and spleen. I was seen at the Hammersmith Hospital by the embryonic NAC team.  I was treated by way of a stem cell rescue transplant here in South Wales in 1998.  I am monitored annually at the NAC and to date my amyloid deposits are pretty well gone.  I am a lucky person in that respect.  I do however have chronic kidney disease, currently at stage 3b.  I am looking for cook books/diets for someone who needs a diet low in potassium, sodium and phosphorus.  I am waiting to see a renal dietitian but want to get on with cooking in this way having had an emergency admission to hospital last week with a dangerously high amount of potassium in my system.  (Hyperkalemia).  There are many books on the market but I am wondering if anyone has direct experience of any particular books.   All suggestions gratefully received.
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General Discussions / Re: AA Amyloidosis
« Last Post by SuzanneH on October 10, 2019, 02:37:24 PM »
Thank you both for your responses.  It’s good to know there’s information and support available.
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General Discussions / Re: Tafy
« Last Post by Lewis on October 10, 2019, 03:43:28 AM »
Thanks for that information Miriam
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General Discussions / Re: AL amyloidosis & arthritis
« Last Post by patpinchin on October 09, 2019, 09:01:16 PM »
Thank-you Miriam for asking on my behalf.
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General Discussions / Re: Tafy
« Last Post by Miriam Vered on October 09, 2019, 06:59:59 PM »
Hi Lewis,
I asked the NAC consultants about your question, but unfortunately they said they can't answer as they have no experience with this.
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General Discussions / Re: AL amyloidosis & arthritis
« Last Post by Miriam Vered on October 09, 2019, 06:58:14 PM »
Hi Pat,


Sorry, the NAC consultants say they can't answer, as they have no experience with this.
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General Discussions / AL amyloidosis & arthritis
« Last Post by patpinchin on October 09, 2019, 04:28:48 PM »
Hi Everyone,

We listened  to Professor Wechalekar last evening. As excellent as expected.

Of particular interest to me was the input from Hand Surgeon with hereditary amyloidosis, Dr Carlos Heras-Palou.

He explained how one of the new gene silencing drugs has enabled him to continue to practise his surgery in Derby.

Co-incidentally the conversation moved on to arthritis in the thumb, which affects me. It’s extremely painful.

There’s a very new procedure which I am hoping might work for me.

“Arthrosurface recently introduced a new implant for patients with thumb osteoarthritis. The SpeedSpiral carpometa carpal (CMC) implant is a pre-shaped allograft implant that provides stability to the flexor carpi radialis (FCR) tendon and/or the capsuloligamentous structures.”

Please could you advise, Miriam or perhaps Professor Wechalekar, if this procedure might be possible/work for me.
A while ago, I had X-Rays & a PET scan to the areas involved & elsewhere.

Mr Southgate, my local Hand Surgeon advised me that it was impossible to tell whether the nerve pain in my thumbs, hands, & wrists was due to arthritis or amyloidosis.

Thank-you.

Here’s hoping.... :)
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General Discussions / Re: Tafy
« Last Post by Lewis on October 08, 2019, 09:48:07 PM »
I have a diagnosis of ATTR, wild type and have recently made the decision to start Tafamidis
This is not yet approved or funded in New Zealand, where I live but I can get it imported at horrendous cost
I do notice there is generic Tafamidis available from India at a fraction of the cost
Has anyone any experience or advice re this re quality and availability?
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General Discussions / Re: Professor Wechalekar on Radio 4 Inside Health, interview.
« Last Post by AnnR on October 08, 2019, 01:26:24 PM »
Thanks Pat will tune in.
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General Discussions / Professor Wechalekar on Radio 4 Inside Health, interview.
« Last Post by patpinchin on October 07, 2019, 07:12:51 PM »
Hello Everyone,

Do tune in if you can to the interview by Dr Mark Porter who wants to gather information about amyloidosis.

See attached info for the details.

Should be unmissable!

Happy Listening!
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