POEMS as alternative diagnosis

[Ziggyzugg]

I have been SI B12 for 5 months without improvement and have just been rediagnosed with a very rare varient of myeloma called POEMS which presents with neuropathy, fatigue and many other B12 type symptoms, and low b12 levels ( mine were 107). Just thought you should be aware of this especially if you have a history of blood cancer and raised paraproteins (often called MGUS). I was diagnosed and successfully treated for a plasmacytoma 10 years ago. I am pleased to have a correct diagnosis but would prefer b12 deficiency, the treatment is simpler and prognosis better. I don't want to panic anyone. Like b12 deficiency many few doctors are aware of this and might need assistance coming to a correct diagnosis. There's a good blood test called VEGF (vascular endothelial growth factor) usually requested by a haematologist.

[wedgewood]

Thanks for that information. It all helps us to build a bigger picture . I hope that you make a good recovery .

[Nackapan]

Thank you

[fbirder]

My neurologist initially thought I had paraneoplastic syndrome (of which POEMS is one type) but changed his mind when he found that my neuropathy was only sensory.

I hope your treatment goes OK.

[Ziggyzugg]

Thanks fbirder.