Author Topic: MGUS and concerned about Amyloidosis  (Read 465 times)

Tiger87

  • *
  • Posts: 3
  • Reason for joining: MGUS diagnosis, concerned about amyloidosis
  • Diagnosed: March 2021
MGUS and concerned about Amyloidosis
« on: April 14, 2021, 08:15:01 pm »
Hi and thank you for the add. I am a 33 year old female diagnosed with MGUS last month. Igg lambda .2 m-spike with light chains in range and normal FLC ratio. All other bloodwork was normal except for slight anemia, but I have had issues off and on with that for years and am also currently pregnant. However, I am somewhat concerned about the possibility of Amyloidosis given other symptoms I have.

5 years ago I developed neuropathy in my left leg and both feet as well as autonomic issues a couple months later (gastroparesis, esophageal dysmotility and POTS). One year after symptoms began I had another work up by a neurologist and was diagnosed with small fiber neuropathy based on skin biopsies on my leg and ankle. These were negative for Amyloidosis and blood test revealed no m-spike or FLC issues at the time. The cause was labeled as idiopathic. The autonomic issues have come and gone sporadically over the past 5 years and the neuropathy does not bother me enough to take medication. I also have a little amount of small scattered petechiae throughout my body. I don’t have any other symptoms.

Given the recent MGUS diagnosis, my hematologist/oncologist was at first concerned about my history. I have since had a fat pad biopsy done which was negative, a test for proteins in the urine (only trace, not enough to quantify) and a blood test to check heart function which was normal. Since my symptoms started five years ago with no progression, I didn’t have an m-spike or FLC issue a year after symptoms began and given the recent results of the fat pad biopsy, urine test and blood work showing no abnormal FLC ratio or heart issue, my doctor thinks that amyloidosis is highly unlikely and I should put it out of my head (assuming the echocardiogram I have scheduled in a week also comes back normal). I am trying to take his advice, but I also suffer from severe OCD, anxiety and pregnancy hormones are definitely not helping and I am worrying myself sick. I know most people on this forum are not doctors, but I am just looking for some advice about where to go from here. Does it seem reasonable to rule out amyloidosis based on what I have said? Any thoughts or  insight would be much appreciated.

Thank you!

Allison
« Last Edit: April 17, 2021, 05:22:15 pm by Tiger87 »

Miriam Vered

  • Administrator
  • *****
  • Posts: 550
Re: MGUS and concerned about Amyloidosis
« Reply #1 on: April 19, 2021, 12:21:07 pm »
Hi Alison,
Welcome to the forum.
AL amyloidosis is exceptionally rare at your age, and it is extremely reassuring that your symptoms have not progressed in 5 years, your urine protein levels were normal and, most of all, the biopsies did not show amyloidosis. I’m sure a normal echocardiogram will provide further reassurance. I am sure your doctor’s advice is right. 
(answer approved by Professor Hawkins)

Tiger87

  • *
  • Posts: 3
  • Reason for joining: MGUS diagnosis, concerned about amyloidosis
  • Diagnosed: March 2021
Re: MGUS and concerned about Amyloidosis
« Reply #2 on: May 28, 2021, 06:26:26 pm »
Thank you so much for taking the time to read, respond and consult with Professor Hawkins about my situation, Miriam. I really appreciate it as I have been sick with worry. The echocardiogram thankfully came back normal. I have since noticed some ridges from my teeth on the sides of my tongue, but I am really really hoping this is just a result of jaw clenching from the anxiety that has been going on during this process of searching for answers over the past few months. The plan is now to do a bone marrow biopsy after I have the baby just to cover all the bases and hopefully mostly eliminate the possibility of amyloidosis.

Miriam Vered

  • Administrator
  • *****
  • Posts: 550
Re: MGUS and concerned about Amyloidosis
« Reply #3 on: May 28, 2021, 06:39:59 pm »
Good luck. I hope you manage to relax and enjoy your baby and put this anxious time behind you.