I received this email from Mrs. Lane and her aooeal for help. I am asking anyone out there who has pertinent information to help. Here’s Mrs. Lane’s eamil:
I saw your email on the Myeloma website for Atlantic Canada. My son, age 46 was diagnosed in November with CIDP. After 2 months not getting any better, he was admitted to hospital on January 6th and has been there every since. He was diagnosed with MM and several days later told he also has a rare syndrome POEMS..Its now been 2 1/2 monthas and he has had several treatments,Dex ( steriods) 13 radiation treatments and is now on chemo for 4 treatments, 14 days apart. The hospital is now in the process of getting thalitomide from the US.He has severe polyneuropathy and is bedridden 24/7..This is the 1st case of POEMS for the hospital so this is all new to them as well as us.Any information would begreatly appreciated,Thank You,Jean Lane.
I offered this help, but I am also asking that you out there who read this post to also help:
Dear Mrs. Lane,
Pray is a powerful thing but in order to help yourselves you and your son need to know what it is you are dealing with. There are many resources at your disposal, among which is the Mayo Clinic online. There you may find out what you are dealing with. Information is your greatest strength; another are the people with POEMS and they are perhaps your greatest resource.
With the first part, reliable information is paramount. I suggest you go online to (click the link below; you may have to ctrl click it):
Don’t let it frighten you; above all you need faith and belief in your son’s recovery or medical control by your doctors of what he has. Another source of information is NINDS.
National Institute of Neurological Disorders and Stroke (NINDS) find CIDP Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Click on this link. Again do not let this frighten you, you must control you emotions.
Finally, you must seek out those who have your son’s condition and the IMF is the best location I can think of and its list server is the location to find help. Here is the link to the IMF
When there go to find support; there’s a link at the top of the page. Get on the List Server where other MMers communicate. Ask for help, information on your son’s condition and those with it will respond and overwhelm you with information and therapies. Remember, you are not ALONE; there’s HELP. Don’t give up, PRAY and get into ACTION. I have copied this to my friend Susan and she can help you also.
I sincerely hope this helps,
IF ANY OF YOU CAN HELP PLEASE EMAIL ME AT: