thank so you so much for the information and taking the time to write. i am afraid my neuro won’t be as aggressive as i want him to be since i am making steady positive progress. i just don’t want a relapse and i don’t want to be worried about one for years to come.
as far as the side effects…i was 30 weeks pregnant with my son when i was diagnosed and being a single mom, i don’t think i will be having another baby regardless. i am 36 so age should be on my side.
i appreciate all your insight and information. what a dream it would be to get back to my normal life and not have to worry abut this disease getting in the way of normal everyday activities that i have to/want to do with my son.
i will discuss with my dr and see what he says.
As soon as I read your post I counldn’t get the soap between my sheets fast enough. It was a miracle. That first night no charlie horses in feet, legs, hands & arms. And a good nights sleep. However, the joy faded, but still it wasn’t as bad as usual. The soap is still there.
Love & gentle hugs, smitty
I am new to the forum, have had my head in the sand for many years. My heart & mind are bursting with excitement & joy for my fellow CIDP family who have been cured, or are being prepared for transplant!!!!!!!! Have received info from Northweatern to take to my Dr. I pray for comfort, peace & healing for all of us!:)
Why should Alice come back? I mean that in a nice way; now that she is feeling almost normal again, getting in shape to go back to being a peace officer soon, & she & Sophie like to travel, she probably needs/wants to get on with her life. When I was much worse off physically I spent much more time on the Forum, saw so many come & go, especially on the GBS forum. Came on posting how they had been completely paralyzed, now are in the process of recovery, & then when they were well again, they were gone. That is as it should be.
I remember back on the old forum when Gene (take care, be well), Jethro, Jerimy, Marc Muirhead, Cathy B, Brandy & many others posted daily. Now we rarely hear from any of them. I have stayed for almost 8 years, as we are retired, I still have residuals (although I rarely ask for help with them,) so I check this sight every few nights to see if there is anyone that is really bad off that I can relate to. When I see a post like that, I usually PM them, ask if they want to exchange phone numbers, or else email in more depth.
If someone comes in asking for help & all they are told is to get IVIG infusions, some need to realize that not all of us have had success with IVIG. If I had children still at home, when I think back to all of that cooking, cleaning, washing clothes, attending their sports & school functions, where would I have had the time to come here? We need to realize that people do come & go, it is a process, a good one. They get the help they need, hopefully get better & then leave. People threatening to quit the forum, what is the purpose of that? Does one feel that this forum will stop just because they leave? Turnover is good, new ideas & treatments should always be welcome. This is supposed to be an exchange, not someone’s recreation…
I agree with others have written. If, your symptoms worsen please go to ER.
IVIG did not work for me and Plasmaphresis has helped me some. We are going to increase the frequency and hope for a better resonse.
Know that you are in our thoughts and prayers.take no chance with your health. Go to ER..