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General Discussions / Forum now closed
« Last Post by nac-admin on July 18, 2023, 09:35:13 am »
This discussion forum is no longer active.

Please visit the AL amyloidosis topic on the Myeloma UK Discussion Forum at https://forum.myeloma.org.uk if you are an AL amyloidosis patient.[/size]
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Welcome / Forum now closed
« Last Post by nac-admin on July 18, 2023, 09:33:55 am »
This discussion forum is no longer active.

Please visit the AL amyloidosis topic on the Myeloma UK Discussion Forum at https://forum.myeloma.org.uk if you are an AL amyloidosis patient.
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General Discussions / Re: Sap scan
« Last Post by Lesley on August 30, 2022, 11:32:56 am »
Thank you so very very much. I’m sat here crying,     I’m so grateful. Please thank professor Gilmore for me. I’ve had an anxious few days! Xxxx
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General Discussions / Re: Sap scan
« Last Post by Kathrine on August 30, 2022, 10:42:21 am »
This is fabulous news Lesley 🥳
I read your post yesterday and was trying to find some words to comfort you a little but now I don’t need to .
Now go and have a cuppa/ piece of cake and enjoy life.
Take good care.
Xxx woohooo

Just the sort of story that gives others hope and inspiration 💕
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General Discussions / Re: Sap scan
« Last Post by Miriam Vered on August 30, 2022, 10:03:47 am »
This is Professor Gilmore's reply to your question:


You can tell her that things couldn’t really be any better! Her proteinuria has resolved completely and her LFTs have normalised and she remains in a complete clonal response.

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General Discussions / Re: Sap scan
« Last Post by Lesley on August 29, 2022, 10:25:19 am »
Just to add to this all my levels, bloods etc are good x
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General Discussions / Sap scan
« Last Post by Lesley on August 29, 2022, 10:20:29 am »
Morning
I guess im on a tight timeline here with the forum about to close but I need to reach  out for advice.
I went for my London trip. After the scan the dr said nothing to worry about but your scan is all but a replica of last year and we would assume it to showmore regression. He said he needed a second opinion. If all ok that they Would  just send the usual letter.
But my stress levels are through the roof; is it normal for Amy to be slow in regressing 9 years down the line? I’m so lonely and petrified of the possible outcome. Any help please?
LesleyX
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General Discussions / Re: A sad goodbye
« Last Post by HeatherBreeze on August 24, 2022, 09:29:17 pm »
I first found this forum when I was searching for information on amyloidosis as I had MGUS and had developed some symptoms which I was worried could indicate progression to amyloidosis.  My haematologist and GP were initially sceptical and it was Miriam's response to my initial post advising follow up with NAC that led me to get a second opinion and finally a diagnosis.  So for that alone I am truly grateful!
As others have said the Amyloidosis Support is US based so a UK and Ireland group is useful even for practical travel and HSE funding tips as I travel from Ireland.
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General Discussions / Re: A sad goodbye
« Last Post by Simon D on August 19, 2022, 02:40:37 pm »
As stated by a previous correspondent this is a sad loss and I would also like to echo what others have already said. The information provided helped my family and I to grasp an understanding of the disease and its implications whilst on the journey to being diagnosed with Hereditary ATTR amyloidosis.

I also agree with the previous correspondent that whilst the Amyloidosissupport.org is a useful general site it is very USA biased in its communication style and content and not much help when you're being diagnosed/treated by the NHS. The same can be said for the Australian site and others from around the world.

Whilst this forum is still operational I would personally like to thank all the dedicated people involved with looking after me at the NAC , Miriam for the construction and maintenance of the NAC patient forum.


Let's hope that Myeloma UK is able to fill the gap in some way.
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General Discussions / Re: A sad goodbye
« Last Post by Kathrine on August 19, 2022, 06:52:54 am »
I joined this site when my partner was diagnosed with AL Amyloidosis/ Multiple Myeloma Dec 21 with poor prognosis. Age only 41 with 2 young children.
He’s doing remarkably well, treated by UCL, had a visit to NAC last week with results showing reduction in Amyloid/ organs working better/ heart has started to heal.

I’m so grateful to this site and the members that replied to my posts.
It gave me hope, factual and reliable information with great advice.

I have kept in contact with a couple of members offering each other support and lending an ear.

It’s such a shame it’s coming to an end as there’s a definite need for it.

Take good care everyone.
Stay as positive as you can.

We have got this 💪💕
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