what’sleftofjim
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August 23, 2008 at 6:04 pm
This is my first post although I been reading on GBS website for a couple of months. I had a heart transplant in 2005, followed by a two-month coma during which time I was on a ventilator and dialysis. I came out of the coma 100 percent paralyzed — couldn’t talk, couldn’t swallow, couldn’t move a muscle. Ten different specialists were treating me and they seemed to have 10 different ideas of what was causing my paralysis. My transplant surgeon thought and thinks to this day I had GBS, as does my cardiologist, my pulmonologist and several others. My neurologist, however, insists on calling it “undifferentiated polyneuropathy,” which I believe means simply many nerves were messed up in ways he doesn’t understand. One reason for the confusion is that the paralysis began when I was in a coma, so no one knows whether it was ascending. There is no question, however, that the paralysis left from my head down. My left foot and leg in particular still have no reflexes and I have a constant low-level pain and tingling. I have been in physical therapy for three years and all my therapists believe GBS was the culprit. Even after three years, I still have tremendous problems with balance and stamina. I can walk only perhaps 100 feet before I am gasping for breath, even though my pulmonologist says my COPD is very minor.
Does it matter that I do not have after all this time a definitive diagnosis? -
August 23, 2008 at 7:26 pm
Jim:
Does it matter what they call it? Probably not. Because you were in a coma, they couldn’t diagnose it. Maybe they didn’t even know it happened. More importantly is what is the future treatment if any? There isn’t much they can do other that physical therapy, and no matter what you call it, the treatment is going to be the same. Perhaps, for insurance reasons, there may be some benefit to being undiagnosed.
As far as this forum goes, you are welcome to be here even if you didn’t know for sure if you had GBS. You have had an interesting journey, and as far as I am concerned, you are in the same boat as all of of have been in. Welcome to our little community Jim.
With all of that said, my aunt ordered an autopsy on her own body before she died. She thought she had MS and was pretty upset her whole life that doctors kept telling her nothing was wrong with her and she took a lot of grief from members of her church and community. The autopsy showed that she probably had GBS. I don’t know why everyone questioned my aunt’s illness, she never used her pain, her AFOs, or her fatigue to get out of anything. Even though she suffered greatly, she would still outwork any three people. There just aren’t many people who were tougher than my aunt.
Lee
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August 24, 2008 at 8:41 am
Jim,
Welcome! Like Lee said you are welcome here anytime, if for no other reason just to vent. I have a rare form of GBS acute sensory neuronopathy. Alot of us here have all kinds of diagnosis, But what if boils down to is we are all in the same boat. Numbness, tingling of hans & feet, arms & legs & NO balance, I walk only with a rollator. PAIN & discomfort most of the time. Have you had any of ythe tx. for GBS, such as IVIg or Plasma Phoresis? keep us informed & we are here for ya! -
August 24, 2008 at 2:35 pm
I have absolutely no idea what tests were run. I was in the ICU a total of six months and they ran tests almost every day, it seemed like. The neurologist I had for most of that time did lots of tests, but was very uncommunicative about everything, including test results. The wife I had at that time, who deserted me when I was in rehab unable to do anything for myself, detested him. I eventually fired him and replaced him with another I like much better, but he has done no tests. I only see him once every six months and all he does is check my reflexes (a tiny bit in right leg; absolutely none in left) and use a toning fork on some of the muscles. Should I ask for more testing?
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August 24, 2008 at 6:56 pm
Jim:
You know more about the state of nerves in your body than any tests will tell you. All the tests will do is to confirm what you already know. As long as you aren’t getting worse, all the tests will do is consume time and money. That’s just my opinion.
Lee
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August 24, 2008 at 10:19 pm
Jim, welcome to the forum. I hope you find the support here to help you through all that you are experiencing. I know I have.
One question for you…have you ever lived in Canada? I had a neighbor growing up by the same name.
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August 25, 2008 at 1:23 am
Never lived in Canada, Jan. Too cold up there. I have enough trouble dealing with winters here in Memphis. That brings up another question. Ever since the heart transplant and the paralysis, I have been extremely cold natured. I’m only comfortable around 80 degrees. Do any of you have that problem? Is it connected in any way to GBS?
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August 25, 2008 at 9:01 am
Hi Jim! Welcome to the site! So sad to hear what you went through and do hope you get better soon. Sounds like you had a rough time there. But very glad to see that things are turning around some. Wishing you a fast recovery and hope to see you on your feet soon! Cyber hugs
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August 25, 2008 at 10:26 am
My dad has heart issues although not a transplant. However, he is always cold as well and the docs say it is a circulatory problem. Not sure how that would pertain to you but just a thought….
Yeah it does get cold here in Canada, although not everywhere, but certainly where I live.
Take care.
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August 25, 2008 at 11:10 am
Jim,
I have GBVS & yes I am cold all the time. I am most comfortable when sitting in direct sun light. My husband works in a facrory, so he freezes me with the air!:eek:Jim, you have been through so much. As if a heart transplant isn’t bad enough you now have to deal with GBS. If you need anything let me know. I am new to this web site also but I am trying. 🙂
Good to hear from you and keep in touch.:)
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