March 16, 2009 at 3:38 pm
I am also 5 years post onset and have identical problems you do. However, I would take Jim’s advice and avoid surgery. There is not surgery that can restore the nerve (axon) or myelin sheath….that can only be regenerated with time. I am still noticing improvements in my feet and hands, though slow and small, but I continue to be positive and hopefull that it will get better. Best wishes to you for continued recovery.
DinoJanuary 6, 2008 at 5:26 pm
Hi and welcome,
I am sorry to hear about your mom. Four years ago I found myself in similar situation…paralyzed, in icu unable to talk, breathe or eat and infected with pneumonia I caught in the icu. I was moved to a specialty hospital that specialized in treating breathing problems (RML in Hinsdale, IL) until I was weaned from the respirator(about 2 months). From there I went to RIC (Rehab Institute of Chicago) in downtown Chicago.
I did receive minimal therapy during my stay at RML where they mostly did the stretches to maintain the range of motion. I agree with Gene that serious pt is not recommended in these early times. If your mom has to be moved try to find a hospital close by until she is weaned from the respirator. She will need you to be close by so you can visit often.
I knew nothing about it and never heard of GBS but I must tell you that the doctors don’t know much more. I appreciate that they kept me alive in those early days but did not help me at all after that. There is no treatment for GBS. Initialy they may filter the blood using the procedure called Plasma Phoreses (PP) to get rid of the antibodies that are destroying the myelin sheath or give infusion of Immunoglobulin (IVIg) that contains various antibodies from many other people for purpose of minimizing the damage. We still don’t know how helpfull both priocedures are. Our own body will regenerate the myelin sheath that has been destroyed but it will take time. That has been my experience. I am still recovering.
I am sorry to inform you that the road ahead will be long and difficult but there is hope because majority of people recover fully but it may take years.
I hope this is informative for you. If you need any more specific info, please contact me by sending a personal message by clicking on my name at the top left of this post.
Best wishes to your mom and to your whole family. My thoughts and prayers will be with you.
DinoDecember 8, 2007 at 3:38 pm
I don’t believe that testosterone would cause a shock to the system. Testosterone is present and necessary for a normal functioning of our body. We, at our age, have a much lower level than what we had when we were younger. I believe that probably stress, more than shock, contributes to the disfunction of the autoimmune system. In my case, bacterial infection and high stress during the same period were the basis of GBS onset.
You seem to be much better off than many of us who were hit much harder than you and who are taking much longer to recover. Although the life may be diminished for you right now, I believe that you will continue to get better and, if we get to use the testosterone as treatment, I believe that it will speed that process and improve the quality of life. Good luck to you and to us all.
DinoDecember 3, 2007 at 3:07 pm
Thank you for taking the time to read the article. I had pointed out that the referenced studies were done on rats and I am sure the rats did not have GBS. The reference was made simply to point out that the studies suggesat that testosterone and progesterone in seem to have stimulatory influence on the Schwann cells to produce myelin proteins. I believe that the cure for GBS rests simply in that…repair of the myelin sheath.
Your analysis, I must admit, has gone way beyond my comprehension and understanding, so I can not refute or agree to anything you wrote. It is too confusing for me.
However, I would like to point out that two men, who are members of the discussion group have been treated by testosterone and both have experienced a surge in recovery. One so much that he is running now. I don’t think that we should dismiss this so lightly. I stand by my original theory that testsoterone may stimulate the Scwann cells to regenerate the myelin sheath as supported by the testimonials of the two discussion group members who have recovered using testosterone (testosterone cypionate) at high dose.
DinoNovember 20, 2007 at 8:00 pm
We originally went to the GBS Foundation and asked them to put the article in the quarterly newsletter where the GBS patients may read it and then consult with their physicians. However, the GBD Foundation refused after discussing it with some doctors on advisory board. As I state in the article, the doctors tend to dismiss our experience and the animal studies simply because testosterone is a contolled drug (C-III) and its use to treat GBS would be “off-label”. As I state in the article (attachment to Bob’s post) I have called on GBS Foundation to sponsor a clinical trial on GBS volunteers. That would be the most proper way to find out if Bob’s experience could be reproduced in others. Perhaps they would consider it if enough people with GBS demanded that something be done.
DinoNovember 19, 2007 at 3:08 pm
If you read the attached article, the study at University of Milan showed that Progesterone was also instrumental in building myelin sheat in lab animals. The only experience that we can testify to has been in male (Bob) patient. Women also have testosterone but in smaller amounts, however, progesterone could be tried on women to see what happens. What would be the downside?November 19, 2007 at 2:24 pm
I became paralyzed within 24 hrs just as your husband. I was in a hosptial for about 6 months and when I got home I was still totally paralyzed. I was fortunate to be able to hire live-in caregivers to help. It has been four years and I am still recovering. I think that your husband is a wonderful man and is taking it all very well. I did it in a similar way and always with a smile on my face. Care givers respond to kindness as well. They have a hard job and being nice to them will be rewarded with them being nice back to him. Getting angry for being in this situation will not change anything except make life more difficult for you. This experience has brought my wife and I closer together and although I am still in a wheelchair, we enjoy life…not in a same way as before but I believe in a more meaningful way.
This is life and you must accept it and live with it. Your husband will get better slowly I am sure…but in the meantime continue to live your life the best you can without anger and with love for him. I have gone through exactly the same symptoms and recovery in the hospital that he is. At one time I just wanted a drink of cool glass of water and if I died after that I was ready. I failed my first swallow test and that was demoralizing, but 3 weeks later I passed it and couple of moths later I had that cool glass of water and it was glorious. He will get there and he will appreciate life more than ever before. He will appreciate every breath, every drink and every step he takes. Be there next to him and share in these glorious moments that he and you will experience.
During this time of recovery, I have cried many times, not because I feel sorry for myself but more out of frustration and desire to get better. The recovery is coming very slowly but in the meantime I have become more well-rounded by having read many, many books even when others had to change pages for me. I think I am a better person for having this experience. Thank God that he is still alive and that his mind is OK.
I agree with you. the doctors, except for the initial treatments (PE, IVIG and treache (sp?) ) did nothing for me. Please read my article that was attached to the posting “Could testosterone be the cure for GBS”. If you could find a doctor to give your husband an ijection of testosterone, I believe it will help him just as it did Bob.
Your husband’s good mental attitude and your support will get you through this but it will not be easy. Accept it and just live. Make the best of the bad situation. Show your love for your husband and tell him and yourself that all will OK with time…and it will. And please do not turn away from God for only with his help will both of you get through this.
May God bless you and your husband. My thoughts and prayers are with you.
DinoNovember 17, 2007 at 2:13 pm
Thank you for the explaination. I must have GBS because I have been getting better slowly (of course) and have never had a relapse. Unfortunately, I have been recovering now for 4 years. Except for having PP and IVIG during the first 3 months, I have not taken any medication. Have been going to therapy (2/wk) for 3 yrs. resulting in small but steady improvements.
DinoNovember 17, 2007 at 1:13 pm
Allison, et al;
I was diagnosed with GBS but I wonder whether my diagnosis is correct. I have found the neurologists rather ignorant about GBS and other variants. What are the differences between GBS and CIDP and are there any objective and measurable ways to tell the difference?
I would appreciate any info. Thanks!November 16, 2007 at 5:08 pm
[QUOTE=cincycat1]I had about 15 treatments of IVIG all when I was in the hospital 2 diff times. I was lucky I never had any reaction but they always gave me benedryl and tylenol before they started my IV. I was one of the few people that IVIG did not help. Well it helped some but I would always just stay at a certian point.
During my last relaspe my dr tried plama exchange–5 treatments. I saw dramtic improvement on PE after the 3rd one–went from a walker to a cane. I ended up having a total of 7 PE in the hosp and now I have one every week. You can have reactions from the plasma like ivig so I get premedicated with benedryl and tylenol. I have noticed sometimes I feel achey all over the next day so I usually just rest.
I am curious how long has it been since the onset? I had 5 PEs whithin days of onset but nobody ever recommended to have PEs later on. I wonder what experiences others have with PE and how long post onset have they had PEs. Thanks! Good luck cincycat!November 16, 2007 at 4:31 pm
[QUOTE=Payner][Hello: It has almost been 8 months and Randy is finally being moved out of the critical care unit and moving into the Rehab hospital in NorthBay. What a long bumpy road, but we have made it!. Off the vent 3 weeks ago and the trac came out last week. We are ready for the move, but sad to be leaving our family of caregivers in the CCU. We have definately learned a new definition of the word slow, but there is progress, and it is continuing. Randy has a power chair that he uses with head controls to get around in, and just having enough upper body strength to be able to sit on the commode and get to the bathroom for a shower is wonderful. Thanks for all the support I find on this site, it is truly wonderful. 😀 :)[/QUOTE]
I know what you are going through and think that you are on your way to recovery. I was in much worse shape at 8 months post onset. I did not have enough strenght to lift my arm let alone help get to the commode. I am at 50 months post onset and still using a walker and a wheelchair for long distances. Don’t give up hope and keep a positive mental attitude…that is critical. Best of luck and my thoughts and prayers are with you. Dino