4 months and zero results.
AnonymousJuly 11, 2010 at 8:43 pm
I was diagnosed with GBS March 17, 2010. To date I have only saw signs of recovery with the fact that I can walk with a cane instead of a walker. I have severe pains in my feet and hands with sharp stabbing pains. Facial problems with numbness and blurred vision are present with no feelings from my elbows to my fingers and knees to my toes. I have problems with taste. Is this anything that you can relate to? I was hospitalized for over two weeks and underwent 8 full plasma replacements.
AnonymousJuly 11, 2010 at 8:56 pm
Yes, I can relate to all of it, as can the rest of the folks here, except the Plasma treatments; nobody gave me any treatment. I’m glad that you can walk with a cane now; that is a huge improvement, and you’re going to get better, but it takes a long time for our bodies to heal all those damaged nerves, and for the other things to start improving. As much as possible, try to be minimize the discomfort with your footware and clothing, resting often; watch out for overexertion, and avoid unnecessary activity which will only tire you and overtax your muscle fibers.
Have hope, because you have a good chance of recovery. Be patient, and find happiness in your life wherever you can to help focus away from the pain and crippling. Simplify, so you don’t feel overwhelmed by everyday tasks. Eat well, because the body is drawing on protein to replenish those depleted and struggling muscles.
Take good care of yourself.
AnonymousJuly 12, 2010 at 6:57 am
Thanks for the reply. It’s a little difficult to smile when this comes our way. I have been out of work for 4 months now, and can’t go back unless I am at 100%. Talked to Senator Vitter and as a medical doctor he does understand. Trying to work on disability thru S.S. No luck yet, but have gotten him involved.
AnonymousJuly 12, 2010 at 9:40 am
As you probably know recovery from GBS is slow. Considering that you are only four months with GBS you have made good progress going from a walker to a cane.
D.U. gave good advice that will help in your recovery.
Be sure to get a plenty of rest.
Keep up the progress.
AnonymousJuly 22, 2010 at 9:55 am
I had MFS/GBS and it was several months before the double-vision went away (30 years later, if my eyes get too much eye-strain, I’ll get a touch of it). It takes time for your body to heal. Unfortunately, there does not seem to be a gauge that indicates how long. It took me about 13 months to get to the stage where I could go back to school or work. Others have returned much sooner or taken even longer. Try to be patient. I know it is an anxious time but stress and worry may hold you back since you need all your energy for healing.
AnonymousJuly 22, 2010 at 11:17 am
[QUOTE=Pat G]Thanks for the reply. It’s a little difficult to smile when this comes our way. I have been out of work for 4 months now, and can’t go back unless I am at 100%. Talked to Senator Vitter and as a medical doctor he does understand. Trying to work on disability thru S.S. No luck yet, but have gotten him involved.[/QUOTE]
I am in my 11th year now and just came off of my worst flare up since I was sick. It takes alot of time to recover and some of us never make it all the way back. My GBS has turned into CIPD and I have the relapsing form of this disease. It will get better over time. GBS= getting better slowly
AnonymousJuly 22, 2010 at 8:38 pm
Yes, I know it is difficult to smile now that this has happened to you. I was only saying that it helps to deliberately notice and focus on the good things left in life at this time and enjoy them as much as possible. Otherwise, the whole thing seems overwhelming.
Like you, I am concerned over job-loss and loss of income, and no help from the docs. Last year, I earned only about 3 thousand dollars gross, and am living off my savings account, and struggling with what work I still can get as a music teacher.
But believe us when we tell you that because this illness takes a long time to heal from, we who have it must really focus on the good things we have left in order to make it through. When the pain was at its worst, I found it extremely hard to concentrate for many months, but I took comfort in little things…a few hours sleep, eating something, warmth from a comforter, window blinds so my eyes wouldn’t hurt so much, strength to make it through the day, ability to still function though limited. Any thing of beauty or value that could lift my spirits so I could cope with this. And we do hope that you will see improvements more and more as time goes on, and that real practical help will come to you in your financial circumstances.
Saying a prayer for you.
July 25, 2010 at 2:51 pm
I am sending prayers and positive thoughts your way. You’ve shown improvement which is likely to continue. It may take time. I don’t know if you need a second opinion or other types of treatment or just time to heal. I have CIDP and some treatments don’t work for everybody.
As far as the disability. have you considered an attorney in case the Senator can’t get the help for you?
I am going to keep high hopes for your recovery and the financial help you need. Don’t forget to rest, enjoy the things you can and keep tuning in here to ask questions. Some of the most knowledgeable, caring and wonderful folks in the world may come along to change your life.
August 15, 2017 at 6:30 am
It is long process and I believe unknown. I’ve been 42 years since I came down with GBS, was pretty active, no running, but biking riding. Now unfortunately, my knees are failing me and now I can say, I am disable. Looking for answers as how I can succeed with knee replacement. Good luck to you!
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