March 7, 2023 at 2:48 pm
I am so sorry, Bryan! I had what was believed to be a mild case of GBS back in 2012 following a TDAP vaccine. I was never paralyzed but could barely walk. I recovered significantly with PT after 5 months or so. I was teaching Zumba and working full time when I was pressured to get the Covid vaccine back in October 2021. My doctor told me I should do ok since it was different. It was an mRNA vaccine. Wrong! I woke up the next morning and could barely breathe. It hit me pretty fast and hard. This time I was diagnosed with small nerve fiber damage. He said I’d recover in 3-4 months. I could still walk but it did some damage. Apparently, I can’t take vaccines. Haven’t taken Shingles or Pneumonia vaccines. Wish I’d never gotten another vaccine but oh well. I recovered again but it took a toll. I thought I was going to die so feel fortunate that didn’t happen.February 28, 2018 at 3:05 pm
It is the worst sharp piercing pain in the same place! Feels like an ice pick to the eye. I had it originally but now only randomly. Always behind that eye. If something flares it up, it can hurt for a couple of days sporadically but then back to “normal.” I’ve always known that eye was damaged. I can feel it and tell it. The doctors never could see a problem with it but the special PT did. And my vision is perfect in that eye but that eye does not move right and that throws things off a little but I have learned how to adjust. You make me know that I’m not alone with this. I’m out 3 years but my neurologist said 2-5 year recovery period. Did you ever quit having that pain?February 28, 2018 at 2:15 pm
Hi Normison, Glad you are doing so well! I notice that I still have a slight decrease in range of eye motion in my right eye. I had the double vision too and no ventilator. I feel fortunate. My dizziness and vertigo got better with special a vestibular specialist. I hate that problem! You always wonder if it will pass and then it always would but it’s so debilitating at the time. When I get a headache, for some reason I always get the worse pain behind the eye that I had so much trouble with from the Miller Fisher. I still feel a little lag time with that same eye when I’m looking at things. I know it’s damaged. It’s something I accept and work around. One of the reminders. All in all can’t complain. I just always wonder what others who have experienced GBS still notice. I never had surgery or wore special glasses, just special physical therapy for my balance and strength.February 28, 2018 at 6:56 am
I had this I feel like light massage and definitely time helped me. It’s so hard to recover when you can’t rest! When did you get GBS?February 27, 2017 at 8:37 pm
Hi Angeliflow! I’m sorry I haven’t explained the eye exercises. It’s so hard to describe it in words so that someone can understand. Are you doing any better? Have you found a therapist to help?February 19, 2017 at 1:52 pm
1. At my lowest point, I was almost completely confined to the couch since my bedroom was upstairs. I had to have someone hold onto me while I walked to the bathroom. I had so much numbness in my legs that I don’t even know how I could move them. I also had double vision which made it difficult to see clearly. It would take me half a day to rest up for someone to help pull me up the stairs to my shower and I could barely stand upright. If I was able to get shampoo in my hair, I had to take a break and rest on the bed for about 10 minutes (water running the whole time) before I could make it back to rinse the shampoo out. I could not brush, dry or fix my hair. I just pulled on something easy (running shorts & t-shirt) because my hands were not working well. It was a while before I could put on makeup or even cared to (much bigger concerns). I had difficulty eating because I had trouble even sitting up to eat.
2. My neighbor loaned me her mother’s cane but I really needed a walker because both legs were affected. I ended up not using it because I just kept fighting to walk with other’s help in my house. I didn’t get out. Just trips to the ER and other Dr and PT appointments.
3. I had trouble chewing and swallowing. My jaws would get so tired. I started drinking Boost because I couldn’t chew and lost more than 15 pounds.
4. I was out of commission. My kids had to help me.
5. I could not drive because of the double vision and I could barely walk. When I finally could drive again it was so hard to keep the clutch in and my hands would get tired holding the wheel.
6. I didn’t plan anything. In too much pain.
7. I didn’t shop for months.
8. I did find a way to wash laundry eventually but I didn’t fold anything.
9. I am lucky I had a spouse taking care of all of that. (Took 2 years to pay off my bills but done!)
10. I never slept. Completely sleep deprived. So many nerves firing and so much numbness and pain.
11. Laid around all day long except for couple of laps I tried to make around the dining room table and shower then I was done for the day. So exhausted and in pain.
13. Had to go out on FMLA leave because of double vision and inability to stand.
14. Could not type on computer or see to do job. Eventually had awesome PT and able to work again.
15. Never had devices. But did use a yoga ball and walked in a pool to strengthen my core again and putty to regain my finger strength.
16. I didn’t participate in anything for months. Could not even see the tv clearly.
17. I do notice that my endurance is lower but I am lucky to be able to run and work out again. Races take a toll now and I can do a 5k at a slower pace (I ran marathons before). My grip strength has never been the same since.
18. I had great friend and family support. Terrible medical support at the time. But great doctors eventually.
19. I lost my speech at my lowest point and only my closest friends and family were around for that. I was so closed off except I found this site and it was the help I needed so desperately.
20. I dropped off from social media at that time because I felt I was fighting for my life and I didn’t know what was happening to me. I thought I was going to die. I had my family with me, my mom stayed nights and days with me, and a couple of close friends called and visited. I fought through the blurred vision to find this site and got to meet others with similar problems as me. It was the greatest! I still keep up because no one should be alone with this.
I hope this helps. I had a milder case but it didn’t seem so mild to me at the time. I am over 2 & 1/2 years out and am basically recovered. I am glad that you are getting awareness out there on GBS. I was lucky to get therapy early on and I think it made a huge difference in my recovery. Good luck to you in your studies and career!February 19, 2017 at 12:35 pm
I had a milder case that was believed to be the Miller Fisher Variant of GBS. I agree that the length of time since becoming afflicted is very important. There was a bottom point (nadir) for me and it was just under 4 weeks but I think that is because my case was milder. More severe cases may be much shorter than that. I would be glad to help if you need it.December 18, 2016 at 12:46 pm
I have experienced this same type of fatigue, weakness, numbness following me overdoing it. After 2 & 1/2 years, this has gotten much better but I can still tell it. Then after a couple days, I’m back to my “normal” self again too. Whenever I don’t get enough sleep, I can feel the symptoms in my eyes. Whenever I don’t eat soon enough and get a hunger headache or have a sinus infection, that nerve in my eye will hurt on and off for a couple of days and I can tell it just isn’t turning right. In a couple days, it’s better. It used to be so much worse and I needed physical therapy to help because my balance would be affected. I still watch it though. And Angeliflow I am finally getting diagnosed with the Miller Fisher variant with my current neurologist and this happened to me back in June 2014. Initially, I had trouble seeing the t.v. and computer screen and it was hard to do much of anything. I walked outside when I finally could but just looking around was weird and overwhelming and my legs didn’t want to work. I got back on my feet by doing a little each day along with PT. I am in NC too and this is my 4th but best Neurologist. Wish I had found him then! I felt like I was in a terrible area for experienced GBS doctors. It’s just so rare. I hope you can find good medical care and PT and are on your way to recovery!December 13, 2016 at 9:10 am
Normison, my eyes blur when I am tired or get too hot outside. I will notice the weakness then too with turning them but it is pretty slight and doesn’t throw me off too bad. Just wondered if you notice this with extreme heat. It used to really cause me trouble and it didn’t take much activity to cause problems but now it takes more to affect me, thank goodness. If I stay up too late, those muscles seem weaker in the morning and I will notice a delay with opening my eyes at the same time. It gets better after a few times and I don’t notice it as much. Pretty much when I overdo things I feel small symptoms everywhere I was hit the hardest but they don’t limit me like they did previously. It’s a reminder though. I’m 2 & 1/2 years out and very lucky at this point. I can’t run like I did before but I can still run. If I push it, I pay a price. It’s all about balancing my new norm which I’m still trying to figure out.November 20, 2016 at 12:14 pm
I’m glad that you were helped, Normison! When this happened to me no one really understood why my vision was like this. I didn’t get the diagnosis initially so they just thought I was making this up because my eyes were healthy. No one ever referred me to a visual therapist/balance therapist. I just felt terrible for several months. I kept trying to sleep it off but that didn’t work. My sister thought that I must not be the only person to ever have something like this and found this PT specialist online because I couldn’t really see well enough to do much searching but I tried. He was an hour away but well worth the drive! It wasn’t long before I was able to drive myself there because the therapy helped so much. After a sinus infection 7 months later, I had to return for more therapy because of a relapse of some of the balance issues. It didn’t take me long to get back on track again. Glad to know there is helpful surgery for worse cases. Have you met MF folks who had any recurrences over the years?November 20, 2016 at 6:48 am
I went to see a physical therapist who specialized in vestibular disorders and he gave me exercises to do with my eyes which corrected my double vision and balance disorders. It took about 4 to 6 weeks but it completely fixed my problems with this. He said that I had one eye that did not quite track with the other eye because of the damage to the nerve that controlled the muscles for turning my eyes. It apparently was enough to throw off my vision. When I looked around everything didn’t look right either. It’s like things just didn’t feel right spatially. At the time I wasn’t sure why but I could tell that the muscles were not working right in my face and my eye felt some delay when I tried to look at things. My primary doctor or neurologist at the time couldn’t see this from looking at my eyes but this PT had special glasses that he used to measure the turning of my eyes. Even the slightest delay can throw everything off but it can often be fixed with these exercises. He worked with me there and gave me exercises to practice at home. It was so simple to do and I wished someone had told me sooner because it was terrible to suffer with the double vision for so long when it could have been fixed sooner. I thought it would be better if I covered that eye but he said that it was better to work with the eyes to get them to work together better again and the brain to correct for the damage and adjust to fixing the problem. The eye doctor never could help me because he said that my eyes were fine but I guess it was good to rule out other issues. It was, however, the muscles around them the whole time. And glasses didn’t fix it because I tried that too.November 14, 2016 at 3:04 pm
I had many of the same type of MFS symptoms that you have described which began for me back in June 2014, so I am 2 years out. My trouble began following a Tdap vaccine with pain in my right eye and numbness in my face. Then I had this ascending numbness and weakness that went from my toe up my body as my head and face symptoms worsened. I had the double vision and balance issues along with so much pain and pressure. At the same time I nearly lost the ability to walk, could not use my hands well and eventually had problems chewing and speaking. It was the most terrifying time in my life. For several months, I struggled wondered how debilitated this would make me and if I would survive. I did not have very caring doctors at this time but I received good physical therapy and massage therapy. I had one physical therapist who helped me get my strength back with my legs and hands and another that helped me do exercises to fix my eye and balance problems. The help I have received through Physical Therapy was amazing! You may want to check into this if you can. I had a few relapses along the way but the worst for me was about 3 or 4 months. It’s a slow recovery process! Just hang in there and don’t give up. I have some residual weakness that I can still tell in the places that were hit the hardest but it doesn’t really hold me back. I went so long with this before I found out that balance and vision are affected if the eye muscles aren’t working exactly right to keep the image that you see in the right place. Oftentimes, this can be fixed with the right eye and balance exercises. Just thought I would share since it helped me so much. Good luck in recovery and stay positive!August 8, 2016 at 7:19 am
I had what was believed to be a mild case of GBS 2 years ago. I had some cranial nerve involvement too-difficulty turning my eye, double vision, slurred speech, difficulty swallowing, balance issues. I have been helped tremendously by a physical therapist who specializes in vestibular and balance disorders. He has worked with me and given me exercises to help my vision and balance improve. The double vision can have to do with how the image you see is hitting in the eye and if the nerves/muscles around the eye have been damaged then it can affect this image not hitting in the right spot at the right time resulting in blurred or vision issues. It’s amazing at how this can improve with someone who knows how to work on it. Maybe you can check around for a specialist in this. My PT says that lots of problems can cause this kind of trouble so symptoms might improve even if the cause is not GBS. I thought I would have to live with this forever and he says that he fixes problems like this all the time.August 8, 2016 at 7:03 am
I was diagnosed with what was thought to be a case of mild GBS. Initially, I had problems with my cranial nerves and difficulty turning my eye with double vision. I had Miller Fisher suggested to me. It’s been 2 years for me into recovery and I am still suffering with fatigue, eye pain, difficulty turning my eye, blurrier vision and vertigo at times when I overdo things. I’m working with PT. I just wondered if any of you have had these reflares in recovery.July 5, 2015 at 9:36 am
I can relate to this. I’ve been suffering with recurrent symptoms though not as bad again since February 2015 after a sinus infection. I still don’t have the official diagnosis but it was suspected that I had mild GBS in June 2014. When did you first have GBS and what do you think brought it on?