Recent Posts

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General Discussions / Re: Blood Result Form
« Last Post by Miriam Vered on Today at 08:50:45 AM »

Hello Aisling,
Welcome to the forum. I'm sorry about your father's illness.Take a look at the discussion here.
I hope it makes things clearer.
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General Discussions / Blood Result Form
« Last Post by Aisling on March 17, 2019, 09:39:06 PM »
Hi,

We receive my fathers blood test results by email from the NAC once a month. We ship them from Ireland and get the results about a fortnight later, which is a great service.

My question is can you explain the results form? What are we looking for at his last appointment there was mention of a ratio being important it unfortunately it didn’t sink in with us at the time.

My dad has AL Amyloidosis stage 3B Heart Failure and is now in Kidney Failure as well. He is 65 and was diagnosed just a little over a year ago.
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General Discussions / Ear Throbbing/ sore mouth
« Last Post by anna on March 17, 2019, 09:38:15 PM »
Has anyone experienced ear throbbing and problems with balance. I have had my ears checked out and they are fine but my right ear feels sore inside and I can hear my heart /pulse throbbing a lot of the time I suppose in a positive way it means Im alive but its also really annoying and affecting my balance. Also I am now getting ulcers in my mouth cold sores on my lips .Any ideas would help
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General Discussions / Re: CD 38 Daratumamab
« Last Post by anna on March 17, 2019, 09:18:54 PM »
Hi Ive been waiting for a few months for the funding to come to Bristol   (National institute for health and Care  Excellence  NICE)so I can start Daratumamab . The chemotherapy nearly finished me off so am hoping to try this . I fully understand it may not work for everybody  and there may be side affects but am happy to give it a go.Was told I would still have to have steroids and valcade made me very unwell last time .Im happy its working so well for some people and it gives me great hope . If not plan B whatever that may be . Take care Anna
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General Discussions / Re: New Zealander with Amyloidosis
« Last Post by Christopher on March 11, 2019, 09:57:33 PM »
It appears  I have Wild type '(previously known as Senile)  anyloidosis.  Hopefully not the hereditary  type for which I have been tested and results due in a couple of weeks.
No funded treatment  available  but may be able to buy Tafamidis .
Has anyone used Tafamidis for treating  Wild type? Results?
Thanks
Chris.
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General Discussions / Re: Family
« Last Post by Miriam Vered on March 10, 2019, 11:39:03 AM »
Hi Justin,
Welcome to the forum. I'm very sorry to hear about your and your brother's illness. What type of amyloidosis were you diagnosed with? In any case I recommend asking your doctors to refer you to the National Amyloidosis Centre in London.
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General Discussions / Family
« Last Post by Justin on March 10, 2019, 08:54:42 AM »
Hello and thank you for letting me join the group. 
I will try my best to make this as short as possible.  My brother started with symptoms about 15 years ago.  It was brushed off as old age by our local gp.  He was 42 at the time.  He had a numb toe. 4 years ago he was referred to Salford royal and they treated him for cidp.  He ivig, plasma exchange all the medication associated with cidp and then 10 months of chemo.  He has been to London for tests and they confirmed amyloidosis but it’s too last to do anything about it.  He has lost the use of his arms and legs and has stage 1 heart failure.  He’s only 58. 
I went to the same doctor 5 years ago with the same symptoms and was told the same as my brother that it was my age. 51.  After 3 years of fighting with them and threatened to sue them they referred me to Salford royal in Manchester. The doctor said I was paranoid because of my brother and even put it in a letter to my go.  When I got the test results from my emg it was confirmed that I had nerve damage in both my feet and hands. Just the same as my brother.
That was a year ago.  I have seen the consultant once for the results in September.  I have read that the earlier it’s caught the better.  Can anything be done at this stage with me.   
We are all just waiting for my brother to die from heart failure and then it’s my turn.  Is that what we have to look forward to.  It’s very depressing and hard to come to terms with it.   
I read that they have a cure in America but it’s cheaper to do end of life support fro my brother.  He was and is very depressed at reading this.   
My brother is due to go down to London again in July but he said what’s the point.  All they do is test you to confirm your dying but don’t have anything to help you stay alive.
Can I just thank all the people who read this.  I am writing in frustration and I know nothing can be done with either me or my brother. I just want to vent it and get it off my chest.

Justin
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Local Support Groups / Southern Support group meeting May 1st 2019
« Last Post by Pat Martin on March 07, 2019, 04:28:32 PM »
We are holding the next southern support group meeting on May 1st at 2.30pm

Address:

Cedar Lodge
Lynwood village
Sunninghill
Berks
SL5 OFG
satnav: SL5 OAJ

If you would like to come along on the on the day please contact me at: pattom@hotmail.co.uk or you can reply on the forum.
We are hoping to have a Guest speaker on the day.
Best wishes.
Pat Martin.
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General Discussions / Re: Dry eyes.....update
« Last Post by patpinchin on March 04, 2019, 02:17:18 PM »
Thank- you Joca for your very kind thoughts & words.

Amyloid in the conjunctiva tissues of both corneas is indeed rather tiresome to manage.
I seem to spend all day just trying to make myself more comfortable with amyloid also in my oral palatine nerves & chronic pain from amyloid deposits pressing on the nerves in my wrists & hands. 😢
I take 14 painkillers a day but the are of minimal help at best.

Soft tissue amyloidosis is not life threatening but it’s definitely very difficult to live with if you have multiple extensive amyloid deposits affecting the nerves.

I hope all is well with you.  :)
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General Discussions / Re: Dry eyes.....update
« Last Post by Joca on March 03, 2019, 11:13:43 PM »
Hi Pat,
I'm pleased you have got relief with your eyes with these new drops, although your regime sounds very tiresome. Let's hope it continues.
All the best,
John
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