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Author Topic: Amyloidosis  (Read 47 times)
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When all else fails run in circles, shout loudly

« on: June 29, 2020, 06:14:39 PM »

Hi how are we all? Iím very worried about how the Corona pandemic is affecting us all. Not for me (at the moment) but itís very quiet at the site.

Iím very worried about me having Dialysis Related Amyloidosis. I have terrible pains in my back. Started in my neck. Now between my neck, now shoulers and my spine. Did get Naproxen as painstiller. But  with the Covid-crisis it takes a long time to get MRI or X-ray. Also surprised that no-one on the ward had ever heard of it. Turns out they donít have any D-ers longer than 20 years on the ward.

I hope some one knows something about it on the site.

I read that only in Japan a Licelle machine is used to remove Beta 2 Amyloids during dialysis....  Iíve changed my diet in low AGEs (nothing fried, baked, roasted etc. Iís a pity I never looked into this before.

But if anyone knows something about this, I would love to hear. This pain is ridiculous   :puke;

I hope everyone is as well as can be, and just quiet.

Lots of love to all, Cas

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
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