Seven Months with Guillain-Barre Syndrome
Well, since my last update, quite a bit has happened, both good and bad.
First, the good news. Back when I was diagnosed with GBS, the door was left open just a smidge that this wasn’t GBS, that it might, in fact, be Multiple Sclerosis. This door was left ajar because many of the tests were inconclusive. GBS isn’t one of those diseases where you can pee on a stick and know 10 minutes later what exactly you have. And even after a month, we still weren’t 100% sure. We were 99.9% sure, but there was always the possibility that this was some sort of MS. Which would really suck. Don’t get me wrong, GBS is bad, but MS scares the crap out of me. That shit is terminal.
To finally eliminate MS, we needed to wait 6 months, then to do another brain and neck MRI, and compare the results to the MRI done in February. The six months was up in August, so I had another scan done. The scan came back clean, which means that this is definitely not MS. Yay! Wahooo! That .1% chance was a huge weight on my shoulders and now it is gone. I (and my whole family) are greatly relieved.
The bad news is that I had a bit of setback in my recovery from GBS during August. It started in July, when I overdid it working, and slept wrong one night and hurt my neck. That led to a few sleepless nights, and too much ibuprofen, which upset my stomach, which led to heartburn at night, which led to more sleepless nights. No sooner had I got that under control, than did I catch a horrible chest cold brought home by my kids. It took me down for the count completely for 6 days, and didn’t completely clear up for three weeks. During those first six days, my GBS returned with a vengeance. One night, I woke up around midnight, with my arms and face completely numb again, and thought I was going to have to go back into the ER. Panic set in, and I feared going back to sleep. I even woke my wife up to tell her what was going on, just in case it got worse more quickly than I could deal with it. But after an hour or so, the numbness started to subside just a bit, and I was able to sleep.
I ended up taking 12 days off work to get the GBS back under control, during which time I did little but lay on the couch and watch TV (again). I talked to my neurologist about it, and we’re planning on doing another round of the IVIG treatment just to make sure we’ve stopped this dead in its tracks. I was supposed to do it a week and a half ago, but my health insurance company is screwing around, making it really difficult to find a facility that is a) covered in my network, and b) is a facility where my doctor has privileges. We’re still working that out, and hope to have it resolved soon. The truly stupid thing is that had I gone into the ER that first night when the symptoms were really bad, I could have had the treatment there and then, and it would have been covered, as long as I was treated as an inpatient. They just won’t cover the less-expensive out-patient treatment. How insane is that? Gotta love the US Healthcare System. Best in the World. ahem.
Anyway, the time off from work really did get me back on track, though I am not quite back up to where I was, recovery-wise, back in late June, before the downward spiral began. I’m taking it easier now, and obeying a hard-cap on my working hours of 30 hours per week for the foreseeable future. Even if I do feel better on a given day, I’m going to stop at 6 hours of work. I just have to until I truly am recovered.
Sometimes I get a little nervous revealing this much about my life and health in such a public place. I know that the insurance companies that cover me read this site (analytics are a wonderful thing). I know that someday, down the road, a prospective employer may read this site. These are risks I balance with every word I write. But I came to a couple of conclusions while thinking about this:
1. What I write here is true, and what I file with the insurance companies is also true. So either they are going to cover me, or they’re not, but they aren’t going to find anything on here that could ever be construed as fraudulent—which is all they seem to be concerned with anyway. If you haven’t guessed it by now, I have very little good to say about insurance companies these days. I believe that many patients with long-term illnesses are made worse just by the fact that they have the stress of dealing with insurance companies. Single-payer health insurance needs to be the next evolutionary step in the US Healthcare paradigm.
2. I do more good for people who are just starting their battle with GBS by writing about it than I do harm to my own position. I have received letters from GBS patients who have said they really appreciated what I write about here, and that it has helped them to set expectations and to serve as inspiration. That makes me very proud of what I do here, and inspires me to keep writing whenever I can.
My return to writing on a more regular basis is helping me to deal with these setbacks. Even if it’s just a blog entry, or a couple of pages of editing, it feels like I am moving forward with something, instead of just treading water. I was looking back through my writing folder last week, and I realized that the day before I came down with GBS, I was finishing the plot plan for my next novel. I’ve been away from it for so long, that I had completely forgot about that. It’ll be interesting to go back and review the plan to see if it still sounds as good as it did back then. But it will be a while before I take that on. I still have other projects to wrap up first.
August was a bit of a disappointment, and, at times, was very difficult to deal with, emotionally. I was doing so well back in June / early July, that I truly thought that by September 1, I would be back at work full time, and back to exercising on a regular basis. Now, I’ve had to re-adjust that timeline. Perhaps a couple of weeks from now, I’ll be right back it. Maybe it’ll be January. Or maybe it’ll be a little longer than that. Right now, I’m back to taking it one day at a time, and hoping that tomorrow is a little better than today.
Joe Beernink 
Sorry to hear about your setback, Joe, and glad you’re back on the mend. I understand how frustrating and wearying it can be to experience flare-ups. Congratulations, by the way on having MS ruled out. What a weight must have been lifted from you when you got that news!
I was diagnosed 1/1/12-totally paralyzed in one day-GBS confirmed by Spinal tap and MRI-rehab and lots of PT andOT and continuing to do the exercises given when releaed from rehab hospital. Yes, IVIG at $20,000 per night needs to be paid by ins. in hospital or at home. My son got myasenthia gravis and he had in home IVIG for 5 days and it was covered by his insurance. The rules I have had one set back because of walking too far. I thought I was strong enough -no so. I am out of wheelchair,walker and cane niow 8 months later and feel terrific. Back to ballroom dancing. Stay strong Joe-but do the florr stretching exercises and rubber bands for your arms-stretch and stretch a.d play with play dough for your hand strength.
Thanks for the words of encouragement, Patty. Luckily, I didn’t become paralyzed, and didn’t lose a lot of muscle tone or flexibility. My major issue is still numbness and fatigue, but those are slowly getting better. Good luck with your recovery, and keep dancing.
I woke up last Monday and thought my feet were asleep. After thinking they were just very asleep and not thinking much of it i tried to get out of bed. I fell straight down and yelled for my sister and was like i cant feel my feet. Went to the ER where it took them 3 days to tell me i had GBS. Both of my feet are paralyzed needless to say I’m not dealing well with this at all being 25 and having a 3 year old daughter. I live in Indiana I was in the hospital for almost a week and cannot be left alone in case I fall. My family has had to change their whole lives around to help me because I need alot of help. I live in a small town and have already seen two neurologists and have done some research on one who is about an hour drive but i have an appt with him next week because the two i have seen seem to have no answers for me since this GBS is so rare they say. The pain in my feet is just crazy and I can’t walk for honestly more than 5 minutes without getting very tired. I have the leg braces wheel chair and walker thank god for insurance huh? i had the IVIG treatment i think it was in the hospital for 3 days. Id just like to talk to some people who have went thru this. I mean i had NOTHING leading up to this so i am very frustrated and just plain pissed off. I am on 1200 mgs of neurotin 3 times a day and steroids now and they gave me norco which does nothing for the pain and xanax because they say that this causes high anxiety. I’m seeing a physical therapist twice a week for 30 mins and were going to try shock treatment tomorrow to see how dead the nerves are. Id just like to know how did you manage to pain? I mean I’m not trying to get all whacked out on pain meds but DAMN my feet hurt so bad sometimes I just sit and wonder how can i possibly deal with this without taking them?
Hi Angela. So sorry to hear about what’s happened to you. The good news is they got you the IVIG quickly. It really could have been so much worse.
Luckily for me, I didn’t get any nerve pain. I have the Miller-Fisher variety of GBS, which means the problem started in my brain, not in the extremities. I had to deal with losing much of my vision, but the pain was minimal. You should check out the http://www.facebook.com/gbscidp. It’s an excellent support group, and there are lots of people there with experience in dealing with the pain associated with GBS. They listen very well too. Hope this helps. Good luck in your recovery.
My pain was horrific especially all of my back -allergic to most pain meds and nor-co especially. The best pain reducer for me were the Lidocaine patches. You can cut them and put strips on the buttom of your feet. I am 77 years young. My GBS came on just like yours – I fell. Physical therapy has to be just geared to core strength and using certain equipment to get those feet and legs moving. Going up and down their stairs with PT teaching me – remember did not know how to do a thing-slowly learned how to walk-a cute Marilyn Monroe movement -no not what they wanted -learned how far 56 steps was with a walker -stick with it. Do the exercises in bed-try hard to move legs up and down-slide them on the sheets -try to wiggle toes. Just keep doing it everyday -do not give up. The Dr. said I am a poster child for GBS they are shocked at my recovery-because I did all the exercises givern to me at rehab and have the bookletwith the pictures and lay on the floor and do them. Lay on side on lift leg up and down 10 times,then other leg -fogort-first exercise stand at bureau or table and lift up on to toes and back down-try to hold count of three and do them ten times. Kick leg out to side and then other 10 times and then legs backwards. Then lay on back and try to do a bridge and hold it. Then I got to be really good and could sit up and touch my toes and then finally able to grab and hold onto toes and I got up to ten. Recently am trying sit-ups. If you get stressed at all -not good, if you over do it -worse-I overdid it on a trip to Canada and walked because they did not have a wheelchair and the next day I could hardly move. One of my neurologist, told me to walk one tenth of your normal walking schedule -heck that mant only three minutes – this was at month three. Head Dr. at rehab is called a physical medicine physician and I got to see him recently at his office practice -never heard of this specialty- they are not “pain medicine doctors). They deal in all sorts of pain issues associated with autoimmune diseases as well, and he also tested my strength – my arm strength has not come back to where it should be. For eight months I have not been able to share any of this because there are NO SUPPORT GROUPS. I live in Northern CA. It sucked -so I am happy to help you on your road to recovery. My son two months later came down with Myasenthia Gravis
a much more severe and rarer disease. Oh dear goodness he is so sick. Let me know if anything I have said helps you.
Patty
I am thrilled that people write about what is going on with them when they are diagnosed with GBS. The symptoms listed aren’t always clear so you feel really uncomfortable about your diagnosis and just plain scared about every twitch, pain, and everything. I am really amazed about the similarities in our stories. I had a horrific stomach flu a couple weeks prior to my onset symptoms as well as a sore throat/sinus infection that followed. I got better but never fully. I was sitting at work one morning and my eyes felt so heavy that it was hard to keep them open. I even joked with my coworkers by taping up my eyebrows thinking I was just really tired. Around lunch time it worsened and I started to get a strobe light affect in the sides of my eyes. I thought I was getting a migraine and left work early. I came home and took a nap and was surprised that it never developed into a headache. I decided to get out of bed when my mom called and was letting my dog out while I was talking to her. My little pomapoo, Lola decided to take stroll down the sidewalk so I stepped off of my porch to go after her, when I stepped down my knees buckled. Not enough to fall but enough to notice. I told my mom it was weird feeling and as I ventured down the sidewalk they kept doing it. I made it back in and decided to lay back down. My husband came home from work and told him that I felt funny but decided to ignore the weakness (trying not to freak myself out) I made dinner and ate it… during my last bite I got extremely nauseas and threw it up. We deiced to lay down in bed thinking that I may be pregnant. I was laying in bed watching a movie when all of a sudden there were two images one on top of the other perfectly clear. I googled why one might of double vision and everything I read just basically said go to the ER. So, I woke my husband and off we went. The ER was not helpful at all that night. They did a cat scan which was fine and sent me home telling me to go to the eye doctor the next day. I also live in Indiana and I am 27 year old female so they didn’t think it was anything serious and it is a smaller hospital so they wouldn’t look for anything rare anyways. I went home and fell asleep, woke up the next morning with the double vision still present and my balance was horrible! Along with my knees buckling about every 5 steps. I knew it wasn’t at all normal so I called my doctor and she told me to go back to the ER immediately. So my husband and I went back. Luckily there was a doctor that wanted to spend more than 5 minutes with me who did blood work and everything was normal. So with the advice of the on call neurologist they admitted me and ordered an MRI. The following hours were miserable. I was admitted to my room at 4pm 02/18/2013, my parents were on their way from Michigan and I had a room full of family members. I am an Administrative assistant for a PT/OT/ST department so I also had some coworkers there assessing my walking. I was a nervous wreck. The doctor didn’t make it to my room until 8pm. He looked me over and was quite baffled by my symptoms. At this point I could barely walk, walking to the bathroom with family was almost impossible, I had to beg the nurses to let me and not use a bed pan. y legs shook uncontrollably and I had a surging feeling like my whole body was asleep all over. I also had a new symptom, my left eyelid was sagging halfway across my eye. The doctor finally told me that my MRI looked good although he found a Chiari malformation but it was mild and wasn’t likely to cause my symptoms or need treatment. He said that it was possible it could be MS but he didn’t see any lesions. He said that he was going to order some tests but wanted to keep me. A minute later he came in with an ice pack and made me keep it on my eye for 5 minutes. Although painful, my eye opened right up. He said that my 6th cranial nerve was being affected and thought that I may have Myasthenia Gravis. He started me on IVIG and steroids and said I won ofould be in there for 5 more days of treatment. On my 4th day of treatment after seeing 2 more neurologists, a CT scan, a nerve tests, and a ton of blood drawn the diagnosing neurologist came in and said he wanted to do a spinal tap to check for one more thing. He came in about an hour later and told me I had GBS Miller-Fisher Variant. My protein in my CSF was 95 and he said it should be more around 60. Lucky for me, even with the wrong diagnosis, I was started on the right treatment. He released me on the 6th day in the hospital even though I couldn’t keep my blood pressure steady. Currently, I am walking fine, my balance is around 80% normal. I am struggling with EXTREME anxiety, Insomnia, neck pain, shoulder pain, nerve pain, chest muscle pain, and double vision. I have had one treatment of Physical therapy which the PT thought that I was recovering great. I wish that I felt that way. With a rare condition it is hard to confide in people that think that you are just stressing over your symptoms. It is quite alarming when you google this condition and you read things like respiratory failure, CHF, and all these crazy complications. It makes me scared of basically everything. I have been having a lot of tension on my head (I am assuming due to the really tight muscles in my neck and shoulders) When I stand up it feels like my head is going to explode for about a minute then it goes away. I feel like this happens more when I over exert myself. Anyway my symptoms started 2/17/2013. Compared to the hospital I am doing a ton better. I do wish the double vision would hit the road. I just want to thank the people that told their stories It is calming to know there are others out there going through the same thing in my state around my age even. Again, thank you!!
Hi Amanda, I’m so glad these entries are able to help. When I started reading about GBS, the accounts I read absolutely scared the crap out of me, and, as I began to recover, I started having survivors guilt because I didn’t have it as bad as I had read about. It sounds crazy, because what I had was still ‘bad enough’. A year later, and I’m still in recovery mode, though able to do most things, just not as long as I’d like to. It sounds like you have the knowledge and the support structure to help figure out issues as they arise. Just be patient with your body and allow it to heal. Whenever I pushed too hard, that seemed to make things worse. I wish I had just taken 6 months off at the very beginning, and not tired to go back to work so soon. It would have shortened my recovery by months.
Good luck!
My husband was just diagnoised with GBS on 7/22/2012. He was in the hospital for 5 weeks and then in acute rehab for another two weeks. He is getting stronger but is plagued by terrible pain, especially low back. Lyrica and Hydrocodone don’t help much.
It is horrible to see him in so much pain
The only thing that helped my pain because I was so allergic to pain meds was the use of Lidocaine patches everyday when I was in rehab and home -the hospital did them at 8:00PM and off at 3:00Am and then back on. I also layed on a water circulating heating pad that I am sure a medical supply company could provide you with one if Dr. orders it.
My pain was so horrible because I fell when the legs gave out and bruised my tailbone as well.Do not give up,try other options that those of us who have had GBS this year can share.
After 5months feel that the symptoms are returning part of my left thigh. It isvery sensitive to touch and causing me not to sleep
We have the similar time line, however mine is recent. I had bell’s palsy mid Feb 2013 1then diagnosed with MS end of April. Then July MS clinic suspects I have GBS.
I am feeling good and back in limbo. My eye has been quite twitchy the past week. I have a 2nd MRi On my neck and brain in Oct.
I was also trying to pick the lesser of two evils lol not like we have a choice. I realize that it is like comparing apples and oranges. I think that although GBS can hit quick and be fatal, MS is so much more scarier.
I have connected with the GBS society in Bc Canada and am going to help with a western conference in 2014.
There is an older man from near my town who has GBS and is biking from here to the very south… I want to find him soon too.
My former family doctor’s father has GBS and I have approached her for a 2nd opinion.
I have not had the iv or plasma procedures and feel that I fall through the cracks on a diagnosis.
Now I just wait and enjoy being much better.
My left side of my face was paralyzed and my left foot and hands were not functioning well. My reflexes on both sides are flat.
I am gluten free and have gone from knowing very little about all these and have had to research BP to MS to GBS!!!
I appreciate your comments and story and would like to connect.
Jackie