Hello everyone! My name is Kelsey. I am 26. I`m sure like many of you, I had never heard of Gbs until it turned my life upside down! Almost 3 months ago, I had just had a beautiful, healthy, happy, little baby girl. Before I left the hospital, they suggested I get the TDAP vaccine. I agreeded not thinking anything of it. For the next month I was fine. Then at the beginning of May, I started feeling numbness and tingling in my hands and feet. At first I just thought my back was out. I went to the chiropractic and it didn't help. Then I noticed my hands getting weaker and my ankles started rolling when I walked. The first time it happened I fell while I was carrying my little girl. Thankfully she was in her car seat and wasn't hurt! Over the course of the month of May my hands and legs got weaker and weaker. We found out that we needed to see a Neurologist. We made an appointment but it wasn't until the middle of June! As my symptoms got worse we tried going to the ER. The first time they told me they didn't know what kind of tests they needed to do. The second time they told me I was just stressed. All the while I kept trying to get in to see the Neurologist sooner. Finally, a nurse from my OBs office got me an emergency appointment. After seeing me, the Neurologist ordered a STAT MRI of my spine and brain. As well as a full blood work up. A week later we found out all of these were negative. At this point I had to use a walker and could no longer care for my baby. At this point I could no longer stand up off of furniture or the toilet. I fell several times! Finally it got to the point where I couldn't walk or control my bowels. Only at this point could we get someone to agree to admit me into the hospital. The morning I got there the Neurologist wanted to start treatment for GBS right away. We didn't quite understand the treatments so they didn't start till a few day later. I ended up being in the hospital, bed ridden, for 2 weeks. I had 5 treatments of plasmapheresis. When I was discharged, I was sent to rehab. I am now making progress with some small things, but I still cannot stand up with out the assistance of 2 people. I haven't even started on steps. It feels like none of the exercises I do seem to make it any easier . I know that I have it a lot better then most, but I feel like I am no closer to being home with my husband and little girl then I was when I got here over a week ago. What are other people's experience with rehab? Do you seem to have a day where you seem to accomplish a lot and then the next day can't seem to do anything?
Hi Kellaujoh. I certainly had many days like that. I would do pretty good one day and then be so incredibly tired the next. You are making progress. This illness tires so many of us out. You are young and have the motivation of that precious little baby to keep you moving. Keep doing what you are doing and keep positive and look forward. You are doing great. Celebrate the positives and don't beat your self up with the negatives. By the way, are you in the US? If so, I would contact a vaccine injury attorney as soon as possible if I were you. Best of everything!
How long were you in rehab? Yes I'm in the US, but I was told there's no way to prove if the vaccine caused it?
TLC said:
Hi Kellaujoh. I certainly had many days like that. I would do pretty good one day and then be so incredibly tired the next. You are making progress. This illness tires so many of us out. You are young and have the motivation of that precious little baby to keep you moving. Keep doing what you are doing and keep positive and look forward. You are doing great. Celebrate the positives and don't beat your self up with the negatives. By the way, are you in the US? If so, I would contact a vaccine injury attorney as soon as possible if I were you. Best of everything!
I was in ICU for about 3 1/2 months totally paralyzed with a trach, PEG tube, etc. About another month in the ward just under ICU care. About 3 months at Texas Neuro Hospital learning how to do very basic things for myself. Was transferred to skilled nursing facility for another 3 months and then about a year of out-patient therapy.
My case was pretty messed up because I developed pneumonia once while in ICU and once again 3 days into the nursing facility. That sent me back to ICU for another 2 weeks which set my progress back a bunch and nearly did me in because I was so weak and couldn't cough. On top of that, I acquired MERSA at the 2nd ICU.
All in all, I am grateful for my recovery. I just can't say enough about the physical, occupational, and speech therapists. I hated them at the time because they drove me so hard, but that is what got me back on my feet. I hated thickened liquids and the mechanical soft food.I hated wearing those very uncomfortable and hot boots too, but they prevented me from getting foot-drop. My fastest PT progress came when I was able to get therapy in the swimming pool. That is where I finally learned to walk again. I now walk with a cane and still have foot, leg, and fingertip pain, but I tell everyone that even if I never get any better than I am now I am grateful, because it is way better than I ever dreamed I would be.
Every GBS case is different and the same if that makes sense. When people tell me that Thomas, your case was worse than mine, I always reply that no it is not because it is all relative. ANY case of GBS is horrible for the person suffering it because it is unique to them. The best advice I can give is rejoice in the positives, and don't beat yourself up with the negatives. Refuse to listen to people who are negative (including some healthcare workers)
I would still contact an attorney. They will not charge you for just inquiring about it. The vaccine industry does not want people to even know about the vaccine court and most people don't know about it. My GBS was not caused by vaccines, but some are. Best of luck to you. You will get better!
stay positive you can do this, it took the people of the medical field that { four weeks} long to figure out what was wrong with me as well. It was the worst month of my life I was so scared. this G.B.S. thing is for the birds. I am two and a half years into this . keep telling your self yes I can. I know with a young one this is crazy and very hard to do, but you will get very exhausted. but try as you might get plenty of rest. rest to me is like a reset. I had P.T it helped , but at that time I needed it to go a little slower. I was so tired and I felt like I had bricks weighting me down. Take your time it will come back. my case was not as sever as some I never had a vent, never went to my lungs but did get to my feet hands and face . swallowing was not very easy, could not hold my bladder two week into this, but dr. didnt think that was a problem. drs. dont know much about this G.B.S. in the area I live. its been slow going. stretching on my own riding my excise bike, and walking has been great. be careful at first. till you get more steady on your feet. stay positive, you will get better
Hi Kelsey!
I'm so sorry you are having such a tough time. Your story is so similar to mine. I didn't know much about GBS or CIDP until my experience right at a year ago. I was 48 and I had my symptoms about a week and a half after I received the TDAP vaccine too. It started in my little toe with numbness & tingling that ascended up my leg resulting in weakness in my legs, hands, and face. I was never paralyzed but I could barely walk. I was on vacation and had to leave early after about 4 days. I ended up in the hospital but was sent home when my lab work and MRIs were normal. As my symptoms kept worsening, I kept calling the office where I had an appointment scheduled about a month later too and they kept sending me to the ER. It was impossible to get in earlier. I did get in with a Rheumatologist who thought it sounded like mild Guillain Barre but he couldn't help me. When I lost my speech, I was drug tested and told that they thought I was doing that on purpose and sent home again. I kept getting worse with nerve destruction that burned up my spine to the back of my neck and head. My face was numb and I had difficulty chewing. No one would treat me because they weren't familiar and said this was too rare. After I hit the bottom, it slowly started backing back off as I fought my was back.I was fortunate to get referred to Physical Therapy which helped so much. I definitely had good days then bad ones. Still do since I had my relapse 4 months ago. This time it hasn't been as bad in some ways but worse in others. I'm seeing an expert in the field in a couple of weeks. I'm hoping to get answers and a treatment plan. I have learned that you have to be patient with yourself and give yourself time to heal while being careful how you push yourself. I'm not always the best at this but I'm still trying. You will get there. I recovered almost completely before so I am hoping I can again. Congratulations on your baby! She is lucky to have such a strong mom. Don't get too discouraged along the way. You are definitely not alone.
Hi - I had 10 Plasmaphorisis treatments - and they did work. However, it did take quite a bit of time to recover. I remember trying to eat - but had to use my fingers because I could not hold a fork. I just did not have the coordiation in my hands. I was told to never have a flu shot - so I know to stay away from that. I am fully recovered - to the best of my knowledge. My legs are a bit weak when I try to get into a truck that is high - but that may just be my age showing itself. Blessings to you - many do recover fully, and you should also. You have youth on your side.
Nebretta