Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

Old newbie


#1

Hello, I have a great story. I have looked at this site for a few years, learning about my CIDP. In 2013 I was told I had CIDP. I went through the infusions and steroids for years. I had a second opinion in 2018 and was told I have Poems Syndrome not CIDP. Wow, All those infusions when I really did not need them. I guess my thoughts to other people is to always get a second opinion even if the Doctor seems to be spot on. I had a cancerous tumor on my spine which they found during a CT scan just out of the blue! They say this is what caused my CIDP / POEMS. I had surgery and radiation to rid myself of the tumor and about a year later I have been able to walk without a cane and am weaning myself off of the prednisone, which my newest Doctor said I never needed. My timeline is 4 years after I had the tumor removed to get my strength back, so after 2020 I will be as good as I can get. I feel so much better all around and get better every week. I worked 40 hours all the way through this stuff. Remember sometimes dreams do come true, at least temporarily. I am 60 years old and going strong, ready for a new beginning!


#2

My son is 18. We thought it was CMT and after doing genetics testing the neurologist says he actually has CIDP. He has been on the IVIG infusions for the past six months. He just recently had a nerve conduction test done that the doctor says is worse than the one he did before we started the treatments. She now has him on prednisone and still doing the IVIG every month. He has to be admitted into the hospital every month for these treatments for four days at a time. What is POEMS syndrome. I guess what i’m asking is what are the signs I need to look for in my son. There is a strong history of neuro muscular disease that runs in my family. As I said I would definitely say my son has charco marie tooth. But, his neurologist ran the genetics test that showed it was CIDP. Now with the treatments in all reality not making his condition better I am searching for answers and what other condition we may be looking at. If you have any advice for me to give to his doctor please do so. His doctor has actually put his profile and condition on a doctors website for other doctors to advise her because, she is confused as well as to why its not helping. In two weeks I will be getting the results of his most recent brain MRI and also he just had a spine MRI done again. I’m praying there is nothing there and like with your situation if there has to be something there I hope is it curable for my son. Currently, there is no cure it seems and i’m trying to find someone to help me find what I need to help him. He is a very positive young man and so full of life he isn’t letting this condition get him down and i’m trying to stay positive to. Its hard as i’m sure your well aware.


#3

CIDP is miss diagnosed a lot. I waited to long to get a second opinion. My first referral back in 2013 was an oncologist. He found no evidence of cancer in my body. My next referral was to the neurologist, who gave me the CIDP badge. All the infusions I had plus Prednisone the latest Doctor said I Didn’t need either one of the items. So the Oncologist missed the tumor which they said caused the neuropathy to start with! Google Poems Syndrome to find out what is. It is very similar to CIDP and others .


#4

Congrats on getting the diagnosis of POEMS since that’s what you have better to know to start getting the right treatment. I have a friend originally diagnosed with CIDP without benefit from IVIG infusions. Later he got into Mayo Clinic and they saved his life with chemo and stem cell replacement therapy. He was cured of POEMS but still have foot pain all day from the damaged peripheral nerves.


#5

donare, you suggest always getting a second opinion, no mattter what. I am not sure I can agree. I did not get a second opinion since i feel confident that my nurologist diagnosied correctly and treatment is working. If i was misdiagnosed why would IVIG treatment help so many of my symptoms? I read about other persons with this disease and notice that many have other issues that complicate. In their cases most of the time treatment is not working and a second opinion would be warrantied. I think, in my case, getting a second opinion would not be beneficial. Stress agrivates CIDP symptoms and I would not want to have to go through the expense and stress of another evaluation and then possibly having to decide on the treatment choice between the two if they differed.


#6

I have to agree and disagree with you on this. I kept telling my neurologist that I didn’t think the IVIG infusions were doing anything. He said how do I know they weren’t keeping me from getting worse? I finally got to quit the infusions and I didn’t get any worse. I started getting stronger, that’s when I got the second opinion. Now technically is the second opinion right? Who knows. I just keep on trying my hardest, don’t have to use a cane for the first time since 2013. I am very happy


#7

I think we are mostly in agreement here. My neurologist gives me the information and I make the final decision. During my initial visit he suggested a test that he explained why it may be good to have done but I declined because in the end the test does not add quality of life regardless of results [it was not for CIDP diagnosis]. For me my CIDP plan is to do IVIG for 6 months and then try extending the IVIG treatments from thee weeks to every 4 weeks and then if I don’t relapse…5 weeks and so on. You said you thought your IVIG was not doing anything. I would get as second opinion as well if my treatment was not helping and my doctor was not listening to me. In my case I had treatment Tuesday and Wednesday. Today I walk better today than what I did on Monday. This does concern me since I want to be able to extend the time between treatments and it appears that just prior to the next treatment I am relapsing some. I have two more months to go before my follow up. I’ll see how it goes. I’m happy for your proper diagnosis and recovery. You are one of the lucky ones. So many sad stories from sufferers.


#8

WOW! What an encouraging story you have (discouraging in another way however … (missing the correct diagnosis). God is so good …


#9

We are a lot alike. I feel the same on a lot of the comments that you made. I had a lot of things go wrong after the CIDP diagnosis. Six surgery’s later, Two on my spine to get rid of the tumor, which caused all of the stuff I have. One spine surgery was because I got Mersa and had to get opened up and cleaned out ,aarrgguuhhh . So yes it was not just the CIDP it was many other things that got me at once. Hard to get up and walk around after surgery when you can’t walk to start with! No IVIG for now and slowly tapering off the prednisone. I had probably around 30 IVIG’s and now I don’t think I will have to do anymore ever. There is no cure for Poems Syndrome other than getting rid of the tumor, along with the radiation I had for it, so now I am trying my hardest to get back on track. Just never get down and give up. It is so hard to do but you have to stay strong


#10

You know, There are so many sad stories out there, mine is hardly anything compared to theirs, But the 6 surgery’s after the CIDP diagnosis, was a lot to handle. You learn a lot from these episodes, plus I have worked 40 hours per week when I could stay upright. Don’t think about the bad, try to make something good out of nothing.