Sharing my story.
AnonymousOctober 30, 2013 at 4:20 am
Hopefully some can relate to my story, and perhaps even provide some hope for others. My Guillain-Barre story began in May of this year (2013). I am a 40 year old male. I was experiencing numbness in both big toes, and knew something wasn’t right when at one point my legs felt slightly rubbery when I tried to jog across a street. I thought this could be a hamstring sports injury, or even sciatica. I went to an urgent care clinic where doc treated it as such and gave me 10-day taper packs of steroids, muscle relaxers, and a pain medication. After only 1 day I felt no improvement; in fact, even felt more numbness and weaker. I went back to urgent care clinic the following day, I actually tripped over the curb on my way in because I hadn’t lifted my foot high enough, which it is highly unusual for me to fall. The staff person had to bring a wheelchair out to transport me into the office. During this second visit the doctor did not like what she was hearing in terms of what I felt, did not like that I had fallen and she soon informed me that I would be on my way to ER. By this time, nerves, anxiety, and of course GBS had rendered me barely able to walk. When in ER, the emergency room doctor requested a urine sample. I quickly replied that the last time I had tried to walk, I had fallen. He requested assistance for me to walk to the restroom and I could barely walk, stumbling over my own feet. The ER doctor witnessed my trouble walking (which I think was a blessing) and suggested I may have had a stroke. He ordered the CAT scan which came back negative, but I think this is what got me assigned a neurologist, thankfully. Once admitted into the hospital, I had a series of MRIs which showed two herniated discs. This lead to a day of IV steroids and muscle relaxers, etc. Each day I was only getting weaker. Finally the neurologist ordered the lumbar puncture and made the diagnosis of Guillain Barre. He started me on five days of IVIG the following day. By this time I was showing some strength improvements during the manual muscle testing. After 9 days in the hospital I was released to in-patient physical therapy. I made dramatic strength and balance/coordination improvements there during my 7 day stay; I was admitted in a wheelchair and was discharged on a cane. I then had 4 weeks of out-patient physical therapy and was walking on a zero-gravity treadmill after 2 visits. I was soon walking unassisted; granted not with complete confidence, coordination and balance…but walking unassisted. Since September, I am able to run and play sports once again. I do still have residual numbness in my fingertips, which was the extent of my numbness in my hands/arms. I also still have some residual numbness in my toes and the tops of my feet, which the numbness had progressed to mid quads. On a rare occasion I will feel a little uncoordinated, but I feel blessed and fortunate to be close to 100% five months after my onset. At the same time, I pray that I don’t have a relapse. Hopefully my experience will provide a positive outlook for someone that may need it. Thank you for reading, ask me any questions you might have.
November 4, 2013 at 4:23 pm
Hi, JAC. Sounds like you are making an awesome comeback! I am now one year and nine months into recovery and am not as far along as you. Reading that you can now run gives me great hope, thank-you for that.
Re having a relapse, please try not to dwell on that. My specialist told me that relapses are rare and if you start to recover quickly, your chances of not having it happen again are even better. Considering how well you’re doing, sounds like you’ll be fine. Can’t offer you a personal guarantee, wish I could. 🙂
Those rare occasion symptoms are special, aren’t they? I don’t know about you but they always make me stop to consider if I’m getting sick again. It’s simply an “Oh no!” panic moment, which passes quickly. These types of things typically happen when GBS patients get tired. Seems to throw things off. The good news is that rest takes care of it.
Be kind to yourself, you’re doing great!
AnonymousNovember 4, 2013 at 9:02 pm
Thank you azgold; I’m interpreting your name to be someone that lives in Ariznoa. We are almost “neighbors” as I am in West Texas.
I feel very lucky to have recovered so quickly; as I was typing my experience I began to get a strange sense, almost embarrassment combined with unworthiness. There are so many folks here that have not been as fortunate as I have been in terms of recovery. Honestly, I almost did not write the original post for that reason, but ended posting it hoping that it could be a positive influence or an inspiration to someone. I appreciate you taking the time to comment.
Thank you for the words of encouragement regarding a relapse. If it happens I now know exactly what it feels like and what to expect; there was very little hesitation (if any) to seek urgent care the first time, and there would certainly be none should it happen again. I believe that is what was in my favor during my onset days. I still have one more EMG/NCV study scheduled but I am beginning to think they aren’t necessary.
Fortunately the unsettling/unbalanced/uncoordiated feelings are becoming fewer and further in between. I started playing tennis again last month and I was terrified of stumbling over my toes or kicking my foot with my other foot and falling. Now it seldom enters my mind even when running and hitting. I can say that if I am in a seated position for too long my feet will feel numb…and that really gets my mind going.
I will keep you in my thoughts and prayers for your continued recovery. I had a nurse at the in-patient rehab clinic tell me, “I want you to look at that clock on the wall. Each second that passes, you’re getting better”.
If you had questions I would be happy to answer.
Thank you again for replying.
Onward and Upward
November 4, 2013 at 9:52 pm
Thank-you, Joseph! And I love what that nurse said to you, I hadn’t thought of it that way. You certainly are a source of inspiration.
Hey, GBS is GBS, you certainly have nothing to be embarrassed about in a speedy recovery. Some of us may be a little jealous of that 🙂 but bottom line – we all lived to talk about it and most of us are very aware of that fact and are mostly just grateful to still be here. Your account of becoming active again so quickly is wonderful, and something I believe we all wish for each other.
This community is united in experience. I think it gives us all motivation to be cheerleaders for our fellow GBSers and CIDPers. Especially in light of how rare our conditions are. It’s good to come together to share and support.
Re living in Arizona, you’d think so with that screen name but actually, I’m from Ontario, Canada. However, I’ve been to AZ a bunch of times and absolutely love it there. Hence the name. 🙂
November 5, 2013 at 2:18 am
It’s a blessing to know you’ve recovered so quickly. And I hope and pray you get better and better with no relapse! Yes, don’t focus on if a relapse might or might not happen. Just keep living! But the great thing about experiencing something like GBS, is that we know the signs, and can be very careful as to not overwork ourselves. I really like what your nurse said. I will keep that as inspiration! I’ve been in this for 2 years now, but it’s great to know that after it’s over, life will go back to normal, as much as it can. I’m inspired by your post. Thank you!
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