Reply To: A few questions? New and scared

December 25, 2013 at 9:04 pm

Merry Christmas, all!

Last year I was hospitalized after contracting Guillain-Barre Syndrome and I was in a wheelchair. I’d had a flu shot about a month beforehand, and didn’t feel terribly well after having it. I do <span style=”text-decoration:underline;”>not</span> have CIDP. I was given IVIG twice while hospitalized, the second time after I began re-experiencing problems with my hands and arms. I was hospitalized from mid-November 2012-January, 2013, and released into out-patient physical and occupational therapy, sans wheelchair, which lasted until I returned to work in March 2013. I am able to work a five-day week, but do become tired after the fifth day and am glad to rest up during the weekend. I was happy to return to work as I am too young to retire (I was 59 when I developed GBS, and am 60 now) and I wanted to really try to avoid pursuing disability if at all possible. There was also the matter of having group health insurance as provided by my employer and getting those bills paid off. We have a high-deductible policy which I suspect is the norm for most workers in the U.S. GBS medical costs, in my case, were expensive but the hospitals were more than willing to set up payment plans (I cannot speak for CIDP medical costs). I should be free of the bills by fall 2014.

Whether one has GBS or CIDP, I think that doing physical stuff (free weights, walking) is absolutely essential. I was discharged with a ton of material from the physical-occupational therapy time. It’s a bit challenging to pursue as I live in the upper midwest and we just began winter but I am really trying to keep up with this. I fell and sprained my ankle a couple of weeks ago on the ice on my own property, but it’s healing nicely and I will begin again. I am not quite able yet to abandon the use of a cane while out of my home, especially in the winter, but that is okay. I don’t use it in the office or in our office building. Fortunately my office is connected by an underground walkway, transportation to office.

For the emotional recovery from GBS (in my case), I am seeing a psychotherapist with whom I had a professional relationship before I became ill. This is also essential in the process of recovering from a serious illness. Anything that works (religion of your choice, meditation, Reiki – though I have not tried that) should be pursued.

I have not since hospitalization had IVIG nor was it recommended that I be given it on a maintenance-type basis (I live in the United States – in other healthcare systems the recommendation might be a different one). I was told that GBS “might” return but not “will” return.

Please keep us posted!