POEMS

[lownskater52]

Hey everyone,

Has anybody ever heard of the disease called POEMS Syndrome? It's a rare disorder that seems to have a connection to b12 deficiency. I'm worried that I may have it. Some common symptoms i have are low b12 (159 when first tested), some large but painful lymph nodes around my chin, Shortness of breath occasionally, some light neuropathy occasionally, some testicular atrophy/low libido.

A lot of the symptoms overlap with b12d. It's a lot more serious.

Thank you

[Sleepybunny]

Hi,

Have you discussed your concerns with GP?

UCLH (University College London Hospitals) runs a national clinic for diagnosis and treatment of POEMS syndrome and conducts research. Perhaps GP could refer you there if you're in UK?

uclh.nhs.uk/OurServices/Ser...

I am not medically trained.

[lownskater52 in reply to Sleepybunny]

I have not yet SB but I plan too. I just found the disease last night. Unfortunately I'm in the states...

[buster_uk]

I had a period of passing undigested food. I think it was down to low stomach acid.

My b12 was vertually(sp) none existant at the time. I've not noticed it lately.

[lownskater52 in reply to buster_uk]

That's encouraging to hear B_Uk. My digestion was damaged heavily by Omeprazole (Prilosec) 10 years ago when I started becoming b12d. How long did it take following supplementation to see and improvement in stomach acid/digestion?

[buster_uk in reply to lownskater52]

A while, but I also take HCl with meals now. I did the bicarb test a few month ago and got no burp. Only sent me straight to the loo for explosive runny poo.

[lownskater52 in reply to buster_uk]

Damn a while huh? Bummer. I was thinking about taking HCL tablets as well. I really appreciate the feedback and help man.

[buster_uk in reply to lownskater52]

No worries. HCl is worth a go or apple cider vinager