Hi everyone, i've posted here before with relation to my weight loss, peripheral neuropathy, dizziness and the discovery of the IGG Kappa monaclone in my blood and urine. I was concerned over Myeloma or Lymphoma but was advised this could possibly be MGUS. I've since had so many tests and have been diagnosed with Sjogren's but then further tests have revealed I have multiple sclerotic bone lesions in my Lumbar and Thoracic spine and in my pelvis, I have now been told they are looking to diagnose me with POEMS syndrome but as its so rare i'm struggling to find and forums? is there one on here? does anyone have any experience with POEMS, I seem to be getting weaker and weaker by the day, I cant breath properly and go dizzy and almost pass out all of the time but there are so many more tests I need to have I feel like the specialist forget that during all of this I feel so poorly 
thank you in advance
Hi
I'm sorry to read that you're still being investigated to find out what is wrong and that they now suspect POEMS syndrome.
I'm afraid that there isn't a forum here for POEMS syndrome but I have found this information for you from Myeloma UK.
You could join the myeloma group here, if you are diagnosed with POEMS syndrome, as Myeloma UK say that this syndrome can be related to myeloma. However, I've had a look and unfortunately there's no one currently suffering from POEMS syndrome in the myeloma group for you to talk to.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi again I have searched the site and there is not hits on POEMS syndrome but you may also want to join and post in the MDS/MPN/ET/PV/myelofibrosis (MF) rare blood cancers group as there may be someone looking in has it or knows someone who has it.
Thank you Thehighlander I did think that might be the place to post, it seems to be so rare it’s difficult to find anyone else, although that’s a good thing that many people don’t have it if that makes sense 
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