Feeling down

John,
Do you ever wonder if it has turned into cidp? I worry about that with Kevin every minute of every day. Every time he is weak, I wonder if it is cidp and if we should be running to the neuro.

Have you had a ncv/emg lateley to compare with an older one to see if there is actual worsenning? Just some thoughts, good luck, and I hope you feel better over the weekend.

Dawn Kevies mom 😮

Hi John,

I’m over 10 years post and my attitude and health is continually going up and down. Sometimes for no rhyme or reason, other times I know I have overdone something. I do believe aging is not doing me well… nothing we can do about that, huh? Over the years, this forum has helped me soooo much. Keep venting when you need to!

Yeah, life sucks. Then again, what are our choices?

I find solace in playing Internet team oriented games. I like to throw cyber-grenades and rockets at the other pubbers thinking on a slightly unconscious level they gave me GBS and ruined my life, “Take that you son of a *%@)#*_@#$”, I yell, while venting my displaced anger. I get into a cyber-chopper and lay into the masses of friendly gamers, leaving them in a heap of discarded packets. “Rocker, you ($#%*@#)%*_”, they yell at me, as I cut them down time and time again. I think, “That is what you get for taking all of my vitality, you #%@%&.” Strange, but I can run for miles in cyber-worlds without ever getting tired, yet seem to tucker out sometimes for days after cutting the grass in real life. Go figure. 😮

Displacement is a good defense for me, as is rationalization, which is why I sometimes visit this Forum. That, and I still feel a need to learn about my disorder. It reminds me that so many other POST GBSers are in much worse circumstance than I, so who am I to complain? The sad thing is I frequently do complain and feel guilty for doing so. DOH, now I feel depressed again….grrrrr…off to blow up the cyber-folk! heheheh

Chrissy summed it up quite well. I am post GBS 12.5 yrs and it’s always been up and down. I am in the midst of readying for my daughter’s wedding, the 6th of Oct, and here come the”flare-ups” from all the excited busyness 😮 So, I take a prone rest and then go again. Yup, sometimes I take an extra neurontin at nite and ask for a foot rub 😀

Fear of what “may come” in the future is very draining on the mind and therefore the body, too. Besure to read the thread that Ali started called “The Five stages of Grief: Neurology Now”. I think it will help you with some perspective on these “crazy” diseases!

Rocker,

I savvy what you mean…………….I will finish your quote,(if you don’t mind), and which is the way I heard it said, and it goes………”Life sucks and then you die”! ………

Peace my friend,

Per

Bruno,
Thats my dads name! Anyway, the fact that you say you are getting worse over the past six months concearns me. I know ncv/emg’s are awful, as well they do not always tell the story, but would a repeat benefit to insure that since the passing time from Feb. I believe you said there is no further downward change? We were told to try and bring the old ncv/emg study so that the neuro doing the test can duplicate the same nerves. How about an l/p just to be sure there is no new elevation in the protein indicating maybe cidp now?

As I mentioned before, I worry about this daily any time Kevin has a new issue. Kevin (10 years old) also followed the same course as you. Diagnosis gbs (aidp) 10/06 some residuals in 3/07 ivig and re dx to cidp 3/07, ivig every six weeks till june. Repeat ncv/emg, all is normal practically. So now they believe it is aidp again, they did not feel that in 9 months there would be such great improvement to almost normal if it was cidp. He also has all of his reflexes back. What was the determining factor in your case that also caused them to rediagnose you? This is all so confusing! I just wonder what is ahead for Kevin the rest of his life!? I wonder how long these residuals will follow him for! Sorry to go on about Kevin, I know this was your post, but you sound so similar to Kevin, it just got my attention!

Dawn Kevies mom 😮

Hi Bruno: I am 27 months post GBS and as I wrote in other threads I went from wheelchair to walker to cane, and then two years later from cane to walker to wheelchair. I have residuals like you do and the doctors also tell me that I will never get worse, only better. But I went through a crisis six months post and stopped healing after that. I have not changed in almost two years, except the pain kept getting worse. So I went into the wheelchair and onto strong pain medicine, and sleep a lot, and also gained a weight, but am painfree, which is a great blessing. I am 61 and do think age has something to do with how much the nerves heal and how fast.
I am not paralyzed and nowhere in the condition I was in when I had GBS, but the residuals are powerful and the wheelchair was one weapon I used to get my life back. So I wouldn’t be afraid of the wheelchair if I were you. I doubt you will become paralyzed again, unless you get a recurrence or CIDP, but you might need the wheelchair to deal with residuals. If so, it can really help. I was depressed when I was told how weak my legs were still and that I needed the chair to protect my muscles and myself from more pain and fatigue, but now do feel much better using it. And, for the record, do feel I have gotten worse and think there is a Post GBS syndrome. Jeff

John: there are so many contributing variables to our residuals and fate. Age is one, but rapdiity of onset and degree of paralysis are others. My paralysis was very rapid and unfortunately, IVIG did not work for me. If I knew then what I know now I would have insisted on a second round, but the docs thought it was more important to rush me over to rehab, with the result that the disease continued unimpeded for another week. As a result of all of this I had more extensive axonal damage than others might. I am rooting for you that your residuals tone down and you keep your mobility, but I would be happy to take your call to remind you that we can find acceptance no matter what.
And Dawn: I can only imagine what it is like to watch a child go through this. But if you worry about Kevin’s future you will miss his present. There is so much to worry about with diagnosis and residuals that it can eat at us and rob us of our joy. I think the best thing one can do as a caregiver, and I learned this from my wife, is to accept what is and be supportive with as little fear as possible.
Jeff