things that make you go hmmmmmm

November 12, 2010 at 10:06 pm

[QUOTE=JimM]First must thanks ALL on this site for SO much helpful info – I have been visiting for over a year but rarely post.

Symptoms began in June 2007, diagnosed CIDP in July 2007 after Spinal Tap supposedly confirmed. Treated with Prednisone and IVIG immediately. Added Plasma Exchange in the Fall. By early 2008 had progressively gotten worse, needed AFO’s and cane. Started Cytoxan in Jan and in February was doing IVIG weekly, Plasma Exchange 2 x per week and Cytoxan monthy!! By March was still getting worse, needed walker to get around. In March 2008 I woke one morning could not get out of bed. Hospital 9 days- diagnosed with Compression Fracture in L5 Vertebrae. Along with diagnose of Fracture- Doctors now deteremined based on Lesion on the vertebrae and some Urine tests that I had POEMS SYNDROME- NOT CIDP!! Neurologist thinks that my diagnose of CIDP was made after the POEMS started to show symptoms but before the X-Rays showed the lesions- YES he did have a Whole Body X Ray done of me in August 2007! I had 20 days of Radiation treatments in May 2007 and have SLOWLY begun to see improvements – finally. Can actually wiggle toes a bit now 4 months since treatment and do see strength slowly increasing.-

Sorry this post got sooo long, But I really felt compelled to share BACK to all who helped me with information and encouragement during the past year.

I can not stress enough, IF your CURRENT treatments are not making the difference Ask if you have been checked for POEMS and if only done once at Early diagnose ask for a follow up X-Ray. I don’t know how long I would have continued on IVIG, Plasma, Chemo if the Fracture had not happened to point out the POEMS!

Best to Everyone
Jim M
Wilbraham, MA[/QUOTE]

Hi Jim,

My hubby was DX with Mad Sam, then it quickly changed to GBS in 2003. His new neurologist changed it to CIDP July 2010, she is one of the top neurologists in Vancouver BC- he has had 3 previously, that were all stumped with his condition/ symptoms- one nasty one said he was “lucky” because when he asked how he got here, my hubby said “he walked” WOW…. they have now done a spinal tap( took 3 hrs,normally is a 45- 1hr) which they found his protein levels to be 4x higher than normal. UGH…..he has been on monthly cytoxan treatments, weekly plasma treatments, as well as weekly solumedrol treatments. Nothing is working, he feels worse than he ever has. His neuro suggested poems 2 weeks ago, we went back today to discuss what to do next, she is at a loss, has no idea why these treatments aren’t working, at the very least, making him feel better, not worse. He has now lost bladder control, and is feeling worse than ever. Sleeps 90 mins at a time- if lucky! I am going to push the test for poems.. he is to get an emergency MRI next week, she is hoping that there will be an answer in it.

I just wanted to take a minute and thank you for posting and letting others know that if your not getting better with “typical ” CIDP treatments, than it may be poems, or something else. Don’t take no for an answer, keep pushing (as you said) and hold on. My gosh…. 7 yrs, and they still aren’t a 100% sure of what’s wrong. SO sad !!

My love to you all……there truly is nothing worse than watching someone you know be in soo much pain.

I told my hubby today, I get that they can’t make him better; ie walk without a limp; use a cane- but if they could take some of the pain, I truly would be a happy girl. That is my wish.