Each of my relapses have been subsequent to a viral infection. My MD will not differentiate my dx as either relapsing GBS or CIDP. I have not had a biopsy. I do respond to IVIg. In addition to tingling/numbness, I get difficulty breathing, frequent urination and increased weakness. I am pretty weak all the time, tho. Hope this helps you.
I do remember you from the old forum, as I have been active for 7 years now on this sight. Sorry to hear about what is going on with you. At my absolute worst, I was unable to walk, raise my arms or hands off of the bed, had almost no feeling below the neck, & no use of my hands. The numbness did start to go into my face, numb chin & lower lip, also part of my tongue. But then they put me on steroids & I got just enough back to get out of Mayo (after 3 months) & live at home with a power chair & my mother taking care of me for 2 years. I was also getting regular IVIG & PE at this time. After I got the cytoxan treatments, I began to see improvement fairly rapidly. I never had any eye involvement, but did have issues with swallowing & my voice was a just a whisper for the first year.
It sounds like now you might have some CNS involvement going on here? I think it’s time for more agressive treatment, there are some very interesting threads going on with the use of cytoxan & also one long thread about rituxan. I would suggest having your neuro research these treatments regarding what type of CIDP you have. It sounds like relapsing remitting, in that IVIG kept you stable all of these years, but now might be the progressive form.
Randy, Emily, I & others have had luck with the high dose cytoxan treatments, the treatment I underwent back in 2003. I am a little better now than you were at your best, I still need a cane for balance outside the home, but can walk long distances like around a grocery store, or a small museum. For places like Disneyworld, etc. I take a transport chair; push it like a walker, then have someone push me at times to rest. Read the threads on these treatments & email me if you would like more info or want to chat…
I had a relapse after the flu. You need to get checked out as soon as possible my relapse left me with perm. damage in my legs the sooner they treat you the better. Make them listen to you. When i first went in they said i was psychotic and it was all in my head and sent me home i then went to another hospital and they did the proper tests and determined a relapse.
I remember you and your story from our old forum. Have you tried to get ahold of your old good strong friend Pam H to talk to? I can’t relate to you but I thought a hug from all of us would help.
i had gbs two years ago. a pretty severe case numb from the chin down(still)
the flu brought on a relapse earlier this year. went numb again.but i am working partime and driving. lived in the hospital and a rehab center for a long time. Now i am at home with my parents(i am 39)my damage is permanent. wear afos on both feet and walk with a cane or forearm crutches. this is a great forum plus you may be able to find a local support group. I live in charlotte nc and ours meet once a month plus we have a 5k run with a miracle mile and walk to raise money and awareness. I hope you find the support and answers you need fatigue is a big issue with me but i weighed 400lbs before i got sick so i am starting at the bottom. I have ben working muscle that have not been worked since i was in my 20s. upside is nw i only weigh 200 lbs. see you can find the good if you look.
You did not say in your post that you are getting any weaker, so I would not say that you are relapsing. If you notice more weakness in muscle function, such as not being able to physically do something one day that you could do yesterday,that could signal a slow relapse. For me a relapse meant waking up & no longer being able to lift my arms, or maybe no use of my legs at all, even lateral movement.
As far as pain, I think when my pain is worse it means I have done too much one day, or maybe bent down wrong, pulled a muscle, or walked too much. Tonight I am cramping up a lot from overdoing it the last 3 days. A lot of it is in learning your limits & sticking to it, something I myself, am not very good at. But I prefer to live as much as I can, & to the fullest. I will take the pain, & thus I overdo it too often…
Just keep in mind that we are not doctors and cannot answer as such. I can speak from what my viewpoint is. I am stable, I have not shown any sign of relapse/progression for a little over three years. The last time I saw my long-time neurologist I asked him “how will I know if I am relapsing” and he said I would just have to know myself!!! The first year of being stable was kinda a “panic” year….. if my numbness increased, if I got a muscle cramp, if it took two oooomphs to get myself up, if I got so tired that I just wanted to close my eyes and rest….WERE THESE RELAPSES??? Then an instinct just clicked in and I “just knew myself” what I should look for—–the FALLS starting again, my feet turning sideways, the numbness so extreme on a daily basis that I felt like cutting my feet off—–these are the things that stopped when I became stable and that’s what I look for.
I am no doctor, but I would say that you are probably not having a relapse. Fatigue is common to the majority of us, no matter how hard some are hit, or even those not hit so hard. I think you have an extremely demanding job (used to teach English before I got CIDP), and just need to rest as much as possible. I believe there would be signs of weakness if you were relapsing…
vmac. so glad you started this thread. i’ve been wondering that myself. i am 5 years post gbs and got it from an upper respiratory infection. i’m terrified to think i would have to go through this again. i sorta over did it last thursday and thought i might be going through a bit of a relapse. now i know to just relax and take it easy. i rested all weekend and am ready for the gym tomorrow to keep my stregnth up. welcome vmac. feel free to chat any time.
A nurse friend took me aside at a wake we at, to talk…she had GBS 10 or 12 years ago and is scared of going thru it again. I told her about the forum and the low insidence of relapse…which is reinforced here constantly. Her look of relief was just amazing.
When I went in the hospital the forum was were my daughters went for info…and the knowledge helped my wife and I get through it.