Author Topic: could it be amylodisis?  (Read 306 times)

mimi

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  • Posts: 2
  • Reason for joining: a patient i may have amyloidosis
  • Diagnosed: i have not been diagnosed yet
could it be amylodisis?
« on: April 23, 2021, 10:11:13 am »
Hello,
       
        My name is Mimi, I was diagnosed with IGA Kappa light chain MGUS in 2017 and from the first blood test done my kappa chains have been slowly but steadily rising paraprotein levels almost 0 on every blood test, high white cell count and nothing else of any serious concern according to dr. I first started with once yearly app then too six monthly now every 3 months in january one my kappa light chains jumped up by 2 points to 43.98 and my white cell count was in high range as usual rbc high and platelet level 500 then between jan and know i was dianosed with servere sleep apnea lost about a stone in weight and yesterday's blood results platelets were 420 great! rbc normal range and white cell count gone up higher, but that's no biggie for me it's been high for years. My kappa levels had jumped a whopping 10 points almost from  43.98 to 52.12 but the dr didn't seem too concerned and that he won't do anything till my numbers are 100 or over. Although i'm sure he knows what he's doing could i have al amyloidis instead? I would love to get some advice from someone who's in the know! Thanks in advance  :D

Miriam Vered

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Re: could it be amylodisis?
« Reply #1 on: April 23, 2021, 10:55:40 am »
Hi Mimi,
Welcome to the forum. You can ask your doctors to refer you to the NAC - information for referring physicians is available here: https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre/information-referring-physicians
You can also ask your doctors to contact the NAC doctors to consult about your case - contact information is available here: https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre