Hello everyone. I'm here to ask questions for my mother. We are very confused, and concerned.
On October 17th, my mother took the flu vaccine. At the time, my new baby was just 6 weeks old. We were advised by doctors to have our flu vaccines. I had to wait to get mine because while I was in the hospital for delivery I was given the chickenpox vaccine and when I went back for my 6 week check up I had to have a booster. Anyway, long story short, they wouldn't give me the booster and the flu shot at the same time. But my Mom was with me and wanted her flu shot, so she asked me to take her to CVS to get hers. She's had it the past 5 years.
On October 24th, she called me early in the morning at my home telling me that she was having strange feelings and had been having them for 4 days. She said she felt like her chest was constricting, that her feet, legs, hands and arms were tingling - she had diabetic neuropathy as well and described the feeling as neuropathy times ten - she was having full body shakes and she was having trouble swallowing anything except water. We called an ambulance and rushed her to the ER.
Once we got there the doctors in the ER assumed it was GBS because of the flu vaccine and started IVIG treatments immediately and put her in ICU to begin the extensive tests they said were required to determine if it was GBS or something else. They explained to us that IVIG couldn't hurt her, and they would rather start IVIG to be safe than to not start it and be sorry later.
After MRI's, Spinal Tap's, Nerve Density Testing and a whole host of other tests, they ruled out everything else and told us that she had GBS because she didn't have anything else. They sent her home after 5 days and 5 treatments with an order for outpatient physical therapy. My husband, daughter and I moved into her house (for clarification her moving in with us was not an option due to the size of our home) for a week to help her get stabilized into a normal routine again. She started PT and was drastically improved by the time we moved back out. She was using a walking stick instead of a walker (she never lost the ability to walk or move her limbs) and had gotten back to a normal routine, drastically reduced from where she had been before but she was able to be by herself and independant. (Independance is a huge thing for her.)
Thankgiving (11/24) was on its way out. My Mom and I had been texting back and forth about the dumbest crap all day - I'm on the hunt for a new living room rug and my Mom has the best eye for things like that - and she hadn't let on that she felt bad, IF she felt bad. She seemed completely normal. At about 8:30, Mom calls me, and says she feels exactly like she did before we rushed her to the hospital. That her chest was constricting, her limbs were numb and tingly, she was having full body shakes and that she was having to use the walker and was barely shuffling her feet. She said she was afraid to sit down, so she was making herself walk with the walker up and down her hallway, but that her feet were beginning to drag. We flew to her house from where we were and sure enough, there she was. When I saw her body jerk the way it had been doing before, I had my husband call the ambulance and off to the hospital we went again.
Once in the ER her neurologist came in and said "oh. This isn't GBS. It doesn't come back. This is something else." And we are sitting there thinking "you ruled out literally everything else." He examined Myathenias Gravis and CIDP while she was in the hospital this time - again 5 days and took 5 more IVIG treatments.
On the evening of the 25th and early morning of the 26th, she was taking her IVIG and the nurse - our hospital is notorious for bad nursing - had the drip going too fast, so the machine kept beeping. She finally got frusterated and shut the machine off, leaving about 2 ounces of IVIG fluid still in the bottle. The neurologist was NOT pleased the next morning, but that's all that was said. At supper time the evening of the 26th, she began having what I consider to be myoclonic jerks. Because they weren't seizures. Now I am not a trained medical professional, but she was completely lucid and having a conversation with me while all of this was going on. Her breathing was impared to the point that she needed oxygen and she was jerking so aggressively that I was afraid she would fall out of the bed. The medical staff had no idea what was going on, and didn't even know why she was in their care in the first place. They called her neurologist, who perscribed Klonopin to be given immediately and told the staff to start the evenings IVIG treatment early. They didn't start the treatment immediately as was directed by the dr and so my Mom suffered with the jerking for 3 hours. The Klonopin worked in stopping her jerks.
The thing is - and I'm sorry this post is getting lengthy - after that "episode" the doctors seemed to wash their hands of her. None of them ever saw her again. Her neurologist did come in the next morning, and he explained to her that all of this was anxiety..... ???? So on the 29th, he sent her home without a diagnosis, other than anxiety. I've never seen anxiety cause such an episode where it takes 4 people to hold someone down on the bed, but again, I am not a medical professional. My husband, daughter and I moved BACK in with Mom for however long she needs us this time. Her neurologist has seemed to do LOTS of double talking at this point. He set up an appointment with her at his office on the 2nd, then had his secretary call us that morning and cancel saying that she never had an appointment on that day and to come on a later day. He told her that in NO WAY would he send her home with an rx for Klonopin.... she has an rx for Klonopin. Its hard for us to believe anything he says.
We just simply don't understand anything about what's happening here. Instead of doing outpatient PT, she is now doing in-house PT, and is improving daily, but it's still an uphill battle. She is going to send us home soon because the weather where we live is going to turn bad and she wants us in our own home for that. Like right now, she is standing in front of me washing the pots and pans I used to cook dinner.
Was it GBS? Was it NOT GBS? Was the second go-round anxiety? I should mention that November 26th was the 9th anniversary of my Dad's passing and on the 24th my Mom spoke with my brother on the telephone and he sounds just like my Dad and lives 5 hours away. I can understand that SOME anxiety was involved but I can't imagine that it was the cause of this "relapse." Online you hear about people having GBS relapses all the time. We've spoken with several people within our community that have had dealings with her neurologist and they all say he does "rush jobs" and overlooks things a lot.
At this point, I want my mother to have answers so she can get better. I have a three month old baby that needs her grandmother. She told me this morning that all she wanted to do was to chase my daughter down the hall and around the yard. And that's all I want for her.
If any of you can give me any illumination, I'd apprecaite it. Thank you for reading my post, albeit lengthy! We are going to see the neurologist tomorrow (maybe) and we aren't leaving without some clarification.