Just receive is some very crucial information regarding POEMS from Alan Suher. Please vidsit his website at: http://poemssyndrome.info/. I have forwarded his email to Mrs. Lane and her son.
For those who need this valuable information here is what Alan wrote:
My name is Alan Suher and I diagnosed with POEMS in 1998. During these 10 years I have learned a lot and I am glad to pass some information on to you. Being in a hospital that has never treated a POEMS patient is not a good situation. In all honesty they don’t know what to do because they haven’t run this course before. They will do a lot of “trail and error stuff” and that is not the answer.
Have the doctor in charge of the case contact Dr Angela Dispenzieri the Mayo Clinic in Rochester, MN (USA). The phone number is 507-284-2479. Dr. D. is one of the few doctors in the world that understand POEMS and how to treat it.
Sign up on ACOR.ORG and communicate with other POEMS patients. What could be more helpful then being able to talk to others that have already gone through this route?
Finally, go to the website POEMSSYNDROME.INFO This is a website I recently developed for POEMS patients.
These are my suggestions. If I can me of further assistance, please write me at firstname.lastname@example.org
Alan Suher in CT (USA)
Thank you Alan and Jeffrey Hoffen
Here is what Jeffrey wrote:
Hi Mr. Boyd
I saw a quick note about someone with POEMS who might need assistance. A website and community of POEMS patients does exist. The web site was generally put together by Alan Suher (email below).
You can contact him, or me, for further information. Dr. Dispenzieri at Mayo is the leading expert on POEMS. Also, if patient can not get to Mayo I would recommend an Academic tertiary care hospital-one that is affiliated with a medical school. This is a complex disease.