Not diagnosed suspected GBS

Hi, Cathy’s husband here, Marty. Recent history of events. Cathy had cervical spine fusion on November 17. The next day she had a flu shot before leaving the hospital. 2 weeks after the surgery she started to develop signs of confusion and disorientation. The following several days this degraded onto a walking imbalance which we thought was related to the surgery. Her blood pressure then bottomed out 70/50, she went not shock and was not responsive for 15 minutes. The following day she lost the ability t walk on her own, legs just buckled under her. We waited 3 days to take her to the er, they admitted her immediately. She went through a battery of tests all showing negative. Her BP is still uncontrolled high and low. They discharged her with no referrals and no explanation for not being ale to walk. I’m pretty convinced she has GBS but would sow opinions from others. She was tested for MS, cancer, proteins spinal tap, viruses, myleogram, all were negative. We had her li ed up to see a specialist but come to find out they don’t accept our insurance, so back to square one.

Just love predictive text

How is she doing now? Is she still having GBS symptoms?

Still can’t walk unassisted, BP is still erratic as well. Pain level high and running out of pain meds. Hopefully we can find a doc to treat her early this week

Hi Marty, JulesG from ModSupport here. I have just deleted the two duplicate versions of this discussion in case you wonder what is going on.


I found it tough to get in with a doctor especially a neurologist in a timely manner so don't get too discouraged if that is the case. I found it was important to get in with a good primary that believed in me and could get me the referrals that I needed when I needed them. Be selective with your doctors. I saw a couple of specialists who were completely disappointing. It's tough when your symptoms tell you one thing but your tests results don't line up exactly like they should for a definite diagnosis. You need doctors and physical therapists who are familiar with GBS but have also seen cases that may not fit the mold. And stay positive in your search for help. I decided to drop the weight of the negative responses from past physicians, and move on until I found more positive and helpful responses. I think that it's hard to measure something that can't be seen and relay that to people or doctors who haven't experienced it. Through the worst part of my GBS experience, I never found a physician or medications that really helped me but I was referred to a great physical therapist and I think that early assistance made a big difference in my recovery. I now have a great understanding primary doctor but don't need the meds now or referrals but the support is uplifting. Hopefully you can find both the helpful physician and physical therapist. It was always hard for me to get in with the right physician at the right time. Once the time passes, it seems that less can be seen to make the diagnosis more clear. But don't give up! I was able to recover from this and she can too. You have to fight and learn as much as you can. This site was so helpful for me too. I hope the new year brings new recovery and uplifting medical care!

Thank you so much. This is Cathy the one that going through all this.It has been a rough road.When I minute you can walk and then you can’t. Plus the pain have been so bad.I stay positive because I want to run and play with my Grandchildren. I miss them so much.But to sick right now to see them.They would be heartbroken. We had a really hard time finding help . even though I was in the hospital for a week.Trying to get in a clinic . Thank you so much for giving me hope.It so nice to find someone that cares.

You're welcome, Cathy! I was so lucky to find this site. I felt so alone with this when it hit me back in June 2014. I was so scared and the pain was so bad for awhile. The up and downs are tough. You just want someone to help stop it so you can try to recover. It's just such a long road and everyone's journey through it seems to be different. But there are a lot of similarities and others share what they have learned and that helps so much. I know that I hated for people to see me so down but I eventually was able to get past that and work on myself no matter how limited. I did have to step back away from participating with my family at times while I struggled at my worst but then gradually I was able to participate in limited ways until it got better and better and I could do more and more. It helped knowing how this whole thing works and others were fighting this same fight. Even with different cases, most people seem to experience the up and downs all the while working to build strength back while their nerves regenerate once they get past the initial hit with it. The hospital for me helped rule out things but left me dealing with the problem alone at home. They just weren't familiar and didn't really care beyond that. I got turned down by a big clinic initially which was disheartening. But maybe I wasn't bad enough to need them. I thought I was but in hind sight I guess I had more of a mild case though when it changes your life so drastically it feels major. I do think it's important to find good medical care if you can to help you heal. But in my case, I basically recovered without it-though I never stopped trying (still paying medical bills for another year). I'm convinced that good physical therapy and massage made the difference for me. Feel free to message me anytime!