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Living with Polyneuropathy CIDP, GBS, & CMT

Has anyone been misdiagnosed with CIDP to find out you had POEMS? similar symptoms


#1

Have any of you ever been diagnosed with CIDP and then find out you actually had POEMS? I'm a multiple myeloma patient (blood cancer) and have been diagnosed by my neurologist with CIDP. This week I see my oncologist and she might diagnose my disease as POEMS because the symptoms are similar and Myeloma patients are known to get POEMS. From my research I have found that these two diseases have been misdiagnosed because they are both completely rare.


#2

Hi, Fitzpayne. I work in Moderator Support at Ben's Friends and I don't have CIDP, rather, I have PsA, a rare form of inflammatory arthritis. One thing that so many of our members, in all of our communities, have in common is delayed or misdiagnosis. It's one of the hazards of coming down with something rare. (Remind me not do do that again! ;-)

Best of luck with your quest for a correct diagnosis. Most of us knew when we finally received our correct diagnosis because, suddenly, it all made sense.

All the best

Seenie


#3

I know what you mean about "suddenly it all makes sense." The diagnosis of CIDP fit my symptoms. But then I researched the connection between my other disease multiple myeloma (blood cancer) and came up with another possible diagnosis of POEMS, which has similar symptoms but a different treatment plan.

This Thursday we are going to meet with our oncologist to get her opinion. Meanwhile our neurologist went ahead and put in an order for IVIG because it takes awhile for Medicare to approve. That order was placed on 3/4. Seenie, do you have any idea how long it takes for Medicare to approve IVIG treatments?

I do appreciate knowing there are others out there dealing with similar problems. It makes one not feel so alone. So thanks for your response.

take care,

Jim


#4

TJ here. I'm a bit more businesslike LOL:

Jim, you are getting ahead of yourself. While its great to educate yourself please be careful that it does NOT cause you more stress. YES POEMS can be misdiagnosed as CIDP. While this happens roughly 15% of the time it is ONLY with Refractive CIDP. You are not there yet. EVEN IF they suspected POEMS they would try IVIG anyway before starting Radiation and a version is the treatment for MM anyway. CIDP may not be your final DX but it is a starting point. One step at a time. Frustrating I know. The real question is if or when would they start Radiation as well. Hang in there. Sounds like your Docs are on top of it. I assume they are talking to your oncologist???

As far as IVIG approval, that's going to really depend on your supplement. Generally its part of your part D coverage but depending on your service provider, It can also fall under Part A and part B in full or in part. IF they use anything but Gammagard, it can be a bit more involved. Your Docs know the hoops and it won't be long.

I'm only guessing that in your case they are probably looking at Privigen in which case there is a bit more paperwork involved as this medication is used when MM is the primary DX and CIDP is secondary. Both are 10% products. I'm sorry I don't know much more or why the FDA approval is different. They may be able easily substitute a generic formulation though.


#5


Great information. Much appreciated. No I'm not getting ahead of myself. I just like to be fully prepared before I see my doctors. After years of cancer (12) I don't stress anymore but your advice is well taken.

I have AARP United Health supplement, which has been a huge money-saving policy to date.

Thanks again for your support.

best,

Jim


ModSupport said:

Jim, you are getting ahead of yourself. While its great to educate yourself please be careful that it does NOT cause you more stress. YES POEMS can be misdiagnosed as CIDP. While this happens roughly 15% of the time it is ONLY with Refractive CIDP. You are not there yet. EVEN IF they suspected POEMS they would try IVIG anyway before starting Radiation.

As far as IVIG approval, that's going to really depend on your supplement. Generally its part of your part D coverage but depending on your service provider, It can also fall under Part A and part B in full or in part. IF they use anything but Gammagard, it can be a bit more involved. Your Docs know the hoops and it won't be long.


#6

As my Mom used to say, Its a great Life If You Don't Weaken............

Your attitude will take you a long ways. They came up with new complication for me a bit ago. (game changer/ possiblelife ender) I looked at the doc and said NOW tell me something that will scare me and he started laughing. By gosh HE DID come up with something that scared me. The price of the new meds! We are all in this together aren't we


#7


Yes we are all in this together. I'm sorry to hear of your "new complication". Doesn't sound good but you're sense of humor will carry you through! And your courage. Bon continuation.
ModSupport said:

As my Mom used to say, Its a great Life If You Don't Weaken............

Your attitude will take you a long ways. They came up with new complication for me a bit ago. (game changer/ possiblelife ender) I looked at the doc and said NOW tell me something that will scare me and he started laughing. By gosh HE DID come up with something that scared me. The price of the new meds! We are all in this together aren't we


#8

I too was diagnosed with CIDP and did everything for CIDP infusions, steroids and after 4 years I got a second opinion and found out it was POEMS. Kind of disheartening in a way.