ok, so my neuro is convinced that not only do i have cidp...motor and predominatly sensory. BUT, he believes i have multiple myeloma or poems. i did have a full body bone scan and it was OK ...waiting on labs as he is almost certain that i have a protein. ......................he is consultig with my hemo/onco. did i mention i hate waiting. i need to know what the heck is going on!!!! this has been a journey of 27 months so far. Ive been of ivig for 6 months. last 3 were @ higher doses. no relief from ivig tx. ive develpoed a neurogenic bladder as well as toe drop and my hands and feet swell and turn colors.
pain is constant,fatigue...blah blah blah. we all know how we feel....:)
So Im curious to know if anyone is familiar with poems
i live in philadelphia and treat with a "center of excellence dr"
I welcome any thoughts or suggestions
than ks and i hope YOU feel better
I just visited my Neuro today and he mentioned POEMS to me. Said he did not want to say that I have it, but wants to monitor it and in 6 months do more blood tests to see if anything has changed. I have been searching on google to get more info, but I dont show any of the other symptoms, besides the CIDP, so I want too concerned and my doctor didnt seem too concerned either. He did mention though about wanting to do a bone san to check for Multiple Myeloma, so lets see what that tells us when I have it done. Good luck and keep us posted.
I don't know anything about this but I hope you will be okay! I'm glad that you have a good doctor and I know he will do his best for you!
I have never heard of Poems.... well... actually I thought I would click on this and find a witty rhyme. Silly me. What is P.O.E.M.S ?
No idea about poems, but i developed a neurogenic bladder 15 yrs ago at the age of 25. No doctor knows why, last summer i developed cidp. i've been on rituxin for six months and have seen no positive results. i've changed my diet, supplements and a couple life changes and my energy went up. Not as tired or inflamed but still walk with a limp, drop foot and have no ankle support. Tough being a phys ed teacher and trying to raise to kids with this disease. I found that the rituxin treatments make my symptoms worse for about two weeks and then my energy comes back. Any stress or lack of sleep makes my symptoms worse. i recommend ankle and leg braces when needed, water therapy, anti inflammatory diet and rest. Going to try accupuncture soon hopefully this will help.
What would you consider an anti inflammatory diet to be? I can see where one would be beneficial, but would have to look up foods that have an anti inflammatory effect. I've also cut salt out of my diet because my feet and legs swell daily. Sometimes when I get up in the morning after having my feet and legs elevated, my left side will go down to almost normal, but the right remains swollen ( if a little reduced, its not going back to normal at all since this began. ) Dr. suggested TED hose, Okay, yeah... but why is one side swelling? Questions and more questions, and no one has any answers. :(
definately look up the diet, it has helped me more than any treatment or medicine they give me. Their are a ton of diets out there so just try and cut out foods that cause inflammation. Our body, somehow, someway became super inflammed. We need to control the inflammation. My neuro team would not recognize the importance of diet when dealing w autoimmune issues, makes no sence. When i got off my diet i noticed my syptoms slowly come back. crazy. Although not easy at first, i cut out all processed foods, soda and wheat (gluten). Ate a ton of veggies, nuts, seeds and fruit, drank a ton of water. Ran with this for about three months and i saw improvements in my strength and overall energy everyday. I started seeing improvements within the first two weeks. Stamina and mobility went way up. felt awesome. Took off my ankle braces and felt almost normal again. Went swimming once a week and tried to rest as much as possible< kind of tough being a phys ed teacher and chasing my own two kids around. I got another round of my Rituxin treatments and my symptoms came right back. Loss of mobility, stamina and strength. Pretty common after treatments i guess, toxic stuff. try it out, cant hurt. keep me posted
Here is a website worth checking out for an anti-inflammatory diet.
Thank you for responding, and thank you stadem, I'll check it out. :)