CIDP 9 Months then POEMS Syndrome

    • Anonymous
      October 20, 2008 at 7:52 pm

      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

    • Anonymous
      October 24, 2008 at 12:21 am

      [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,
      I found what you wrote very interesting and well worth storing in the old memory bank. I just did a half hour reading about POEMS. Very fascinating.
      Thanks for posting the information. And take good care.
      Laurel

    • Anonymous
      October 24, 2008 at 4:28 am

      GBS/CIDP can mimic hudreds of different neurological diseases.
      After my first EMG/NCV, saying I had peripheral neuropathy
      my neuro wrote a list of all the diseases that matched the axonal damage.
      He even put not neurologic diseases in the list, like lupus and arthritis.
      Then he started looking for all the serum and orine test I had, and gave me orders
      for the test I did not have had, mostly about 20 or more auto antibody test.
      He said lumbar puncture was not necesary because I had not multiple sclerosis,
      after he studied the spinal MRI.
      I feel lucky I could find this neuro, he was the 3rd in my 5 years safari….

    • Anonymous
      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.

    • Anonymous
      November 13, 2010 at 8:14 pm

      Bella we are all rooting for Ric (Dieno here on the forum). He sure is having a tough time. Let him know we are thinking of him, and praying for some answers and relief for him.
      Laurel

    • Anonymous
      November 15, 2010 at 1:32 am

      Thanks for your kind words. Sometimes that is all I can say.

    • November 15, 2010 at 5:30 am

      Hello Jim and all,

      Thanks for sharing. Until today I had never heard of POEMS, but it is the next thing I’m going to mention to my neuro. With these conditions is really difficult to know “what one has”. I had GBS in 2006 then CIDP since (that’s what we think). But, I’m not sure now. Could be multiple sclerosis…or something else. Need to make sure the neuro has checked for these other possibilities.
      I was in the US recently, past 2 weeks, almost paralyzed. Very weak arms and legs. I’m back home but can hardly walk.

      I sincerely hope for you and all the others here that have been and are going through difficult times that you find relief. Isn’t that what we all want for our loved ones?

      God bless,

      Marcio