Swine Flu GBS 1977–Now Post GBS

    • Anonymous
      May 31, 2007 at 1:37 pm

      Hi, My name is Dan I used to come to these forums years ago to find out about Post GBS and to my surprize there was not much,so I think it is GREAT to see that there are Decades later Post GBS’ers on here to help answer peoples questions that may be having problems years and decades later. I know the Old GBS HOME Page had some info on Post GBS decades later but the New Home Page doesn’t –that I can find?, I myself got GBS at 19 yrs old from the swine flu shot I was given in the Army decades earlier, I made a recovery that lasted for decades,I played sports over the years and worked the whole time (Work Aholic). For years I would work overtime alot, Most of these weeks would be 7 days on the job–Warehouse worker–Well It finally caught up with me and now for years I had been on a downhill slide and yes like many others with the same I’m sure went years trying to find out what was going on until I research myself on the internet and found a place to go to get diognosed, Now under the doctors orders my down hill slide has come to a crawl at best,but alot of damage was already done. I wear lower leg braces (AGAIN) and Canadian Cructhes (AGAIN) and spend most of my time in a Electric wheelchair. So all the things I used as I was getting better right after my GBS back then are the what I’m using again and this time the recovery isn’t coming just the coping and doing to best I can w/out over doing it. I’m also on SSDI and was approved the FIRST time around with a diognoses of Post GBS–Renewed weakness ect–ect. I’m here if anyone would like to ask me anything–Post GBS’ers keep up the great work on here.
      Thanks God Bless Dan

    • Anonymous
      May 31, 2007 at 4:44 pm

      Dan –

      What did your doctor(s) do to stop the downhill slide?

      Chris

    • Anonymous
      May 31, 2007 at 4:47 pm

      Oh – and welcome here! 😮

      I didn’t mean to reply so curtly… dealing with frustration of a phone message that I just got from my neurologist’s office where he seems to be kinda brushing off my post-GBS symptoms…

    • Anonymous
      May 31, 2007 at 11:31 pm

      Doctors put the brakes on me over doing it, I have to rest when I’m tired,pace my activities,as you may know people who have servere Post GBS is just like POST POLIO,you can Google Post Polio and get all kinds of information unlike Post GBS, someday It will I’m sure,when that days comes only God knows,but anyway just like with Post Polio all other things need to be ruled out before a diagnosis can be made–things like MS,ALS and the list goes on. Once these things have ruled out then You can say now I know for sure. God bless

    • Anonymous
      June 1, 2007 at 12:13 am

      Welcome back Dan. I have considered Post polio and residuals in GBS to be the same. Because both are not the original illness be after effects. What do you think? There is some information available on residuals.

    • Anonymous
      June 1, 2007 at 11:53 am

      [QUOTE=Mauricette]Welcome back Dan. I have considered Post polio and residuals in GBS to be the same. Because both are not the original illness be after effects. What do you think? There is some information available on residuals.[/QUOTE]
      Hello Mauricette, GBS and Post Polio are alike in that are believed to involve a slow degeneration of the terminal axon sprouts that innervate the muscle.It is believed that some of the terminal axon sprouts are able to branch out and compensate for ones that were lost during the original attack.Post Polio involves the Spinal cord too where as GBS is believed not to. As of now there is still alot to be learned about GBS in the medical field,they still have many questions that need to be answered and in time like with all diseases I’m sure they will narrow it down. God Bless –Dan

    • Anonymous
      June 1, 2007 at 1:00 pm

      Hi Dan and the rest of the gang!

      I am so thankful to have found this board and posts. I had GBS in 1985 and also thought I’d made a full recovery. My story is like all the others with post GBS so I’ll spare the details, but now I’m just starting the incredibly frustrating part about dealing with docs. Just got a potential diagnosis of fibromyalgia (totally dismissed anything post GBS) and arthritis. In the six months since the tingling has come back in my arm, my muscle pain has become at times unbearable, my overwhelming fatigue is scaring my kids and wrecking our family. I’ve seen my doc three times, an orthopedic surgeon once (was pretty much laughed out of his office). I’m scheduled for a rheumatologist in two weeks. I’m praying she is willing to consider post-polio or GBS or whatever the hell it is and help me get back to myself.

      Sorry if this is a rambling post. Just writing it starts upsetting me again.

      A question for all of you though: How in the world do I find a doctor who is not only experienced in post-GBS, but actually willing to help a patient with it? My primary care could give a you-know-what and I’m pretty sure thinks I’m a nut. I am in the San Diego area in case anyone is close…

    • Anonymous
      June 1, 2007 at 1:52 pm

      [QUOTE=sylvia’85]Hi Dan and the rest of the gang!

      I am so thankful to have found this board and posts. I had GBS in 1985 and also thought I’d made a full recovery. My story is like all the others with post GBS so I’ll spare the details, but now I’m just starting the incredibly frustrating part about dealing with docs. Just got a potential diagnosis of fibromyalgia (totally dismissed anything post GBS) and arthritis. In the six months since the tingling has come back in my arm, my muscle pain has become at times unbearable, my overwhelming fatigue is scaring my kids and wrecking our family. I’ve seen my doc three times, an orthopedic surgeon once (was pretty much laughed out of his office). I’m scheduled for a rheumatologist in two weeks. I’m praying she is willing to consider post-polio or GBS or whatever the hell it is and help me get back to myself.

      Sorry if this is a rambling post. Just writing it starts upsetting me again.

      A question for all of you though: How in the world do I find a doctor who is not only experienced in post-GBS, but actually willing to help a patient with it? My primary care could give a you-know-what and I’m pretty sure thinks I’m a nut. I am in the San Diego area in case anyone is close…[/QUOTE]
      Hello Sylvia, You are doing all the right things going to all the doctors to find out what could be causing your problems you are having now,who knows if might be fibromyalgia or something other than Post GBS,all other things need to be ruled out first,I myself was frustrated like you are right now at one point not knowing what was causing my problems, Had Cat scans looking for MS,thought maybe it was lupus you name it I went to get checked out. Then when I had no more doctors to see because they were all scratching there heads I started researching and found out about Post GBS, I looked for a doctor near me to find out if I had Post GBS and the doctor I went to see was a Nero-doctor who by chance had Post Polio from Polio when he was younger and said I in deed could have Post GBS. So what I did was found a Post Polio Clinic on the net and spoke with the doctor there and actually went there and was eventually Diagnosed with Post GBS and the Doctors stayed with me through the whole Social Security thing. I hope you find a answer soon. God Bless–Dan

    • Anonymous
      June 1, 2007 at 2:41 pm

      I just e-mailed Sylvia about our Neuro in San Diego. Hopefully it will help her.
      This doc is very good. He is Patrick Delaney, the director of the Neuro Science Center at Alvarado Hospital. He is part of the UCSD Medical Center Doctors.
      He was very friendly asked lots of questions and was very honest and up front about what was happening to Nate and what to expect.
      I have trouble finding good docs for Nate but once I do, I hang on to them and refer them to anyone who is looking for one.
      The good ones deserve it, IMO Nates old neuro will never be recommended by us. He told me looking on the internet for info about GBS was a “very dangerous thing to do”. ???????????
      Trudy, natesmom

    • Anonymous
      June 1, 2007 at 9:44 pm

      Thank you for the kind notes Dan & Natesmom! 🙂

      I’m definitely going to give the neurologist a call. In fact, I’m going to go check my insurance site now. Even if I have to pay out of pocket for a decent consult it would be worth it.

      wow, it’s great this board is here….

      p.s. Dan- Thank you for being so strong. By taking care of yourself, you’re also helping us. Oh, and who’s in your lap?

    • Anonymous
      June 1, 2007 at 10:00 pm

      Dan,

      Welcome, welcome! I found this board a few years ago because I thought I was getting GBS again, thankfully I found a few people who were going through the same as I was – this board has been my lifesaver when doctors thought nothing was wrong ….. oh, you know, the usual story….. I am glad you are posting again!

    • Anonymous
      June 2, 2007 at 12:06 am

      Your welcome sweetheart, my son Logan 8yrs old is standing next to me in this picture–sun was at our backs next to the lake.