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Author Topic: SAPscan  (Read 5900 times)

toril

  • *
  • Posts: 4
  • Reason for joining: I have not got the diagnosis. But I have many symptoms, and amyloidosis is suspected. I started to have symptoms 3 years ago. I am norwegian. I have been to NAC for a Sap-scan last february. I really appriciate to be a member of this group.
SAPscan
« on: January 25, 2015, 05:34:32 pm »
Hello.
My name is Toril and I am from Norway.
I have had symptoms for 3 years which can be assosiated With amyloidosis.
But the SAPscan at NAC last february did not show amyloid. Neither did biopsies from BM, fat pad or rectal.
I have IGM, MGUs.
I just wanted to ask if some of you have any suggestions how to move on.
Do you think I should have another SAPscan this year?
My symptoms are smallfiber neuropathy, breathing problems, feeling of big tounge, night sweats and edema.
I also have califications in the lungs, liver and spleen.

Thank you so much
Best regards from Toril
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patpinchin

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  • Posts: 600
  • AL - extensive in skin. mouth + palatal nerves '04
Re: SAPscan
« Reply #1 on: January 25, 2015, 06:23:19 pm »
Hi Toril,

Good to see you here.

I think this is a question one of the NAC Doctors are best qualified to answer.
You do not mention a Free Light Chain blood test. Have you had one recently?
That would help them advise you. If you email one of them, I am sure s/he would help you.
The Doctors' email addresses are on the NAC website. See the list of staff.  :)
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Pat

toril

  • *
  • Posts: 4
  • Reason for joining: I have not got the diagnosis. But I have many symptoms, and amyloidosis is suspected. I started to have symptoms 3 years ago. I am norwegian. I have been to NAC for a Sap-scan last february. I really appriciate to be a member of this group.
Re: SAPscan
« Reply #2 on: January 25, 2015, 09:05:59 pm »
HI Pat!
Thank you for Your answer and thank you for inviting me to this site!

I will have bloodwork sent to NAC NeXT week to check the light chaines again.
And I can also email them and ask what they think about a new sapscan. The problem is that I have to pay as a private patient... But if it can lead to a correct diagnose, I guess it is worth it.

Thanks again for all your support this last year!

Toril
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patpinchin

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  • Posts: 600
  • AL - extensive in skin. mouth + palatal nerves '04
Re: SAPscan
« Reply #3 on: January 26, 2015, 09:53:20 am »
As you say Toril, worth it if you can get a conclusive response. I sympathise with you having the private patient expense plus travel and accomodation costs. Is there any way, the state could help you with the costs? I know in some European countries this happens because specialist expertise in Amyloidosis does not exist there. Worth investigating perhaps? So pleased we have become good friends and to have been able to help you in a small way.  :)
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Pat
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