GBS / MILLER FISHER
September 6, 2021 at 1:22 pm
I was diagnosed with GBS / Miller fisher 10 weeks ago , I like many have more questions than My Drs. have answers. My story is below…
It all started when I got the Covid Vaccine on June 21st. I was sick the day after but I was aware that might happen. On July 1st (9 days after vaccine) my back started to hurt. I was camping so I thought I slept wrong, As the days went on the pain went to my feet but thinking back my feet were hurting since the 1st as well but didn’t think anything of it. On the 4th of July the pain got to great so I stayed in the motorhome most of the day. On the 5th of July for some reason I started not being able to walk and didn’t know why, so we packed up and went home. When I got home I went straight to the urgent care and they said I might have pinched a nerve so they loaded me up with pain killers and steroids. For the next day I thought it was a pinched nerve but the pain was getting worse. The following day on the 7th I woke up got out of bed walked down the stairs and when I got to the last step my legs gave out and I fell. But the problem this time was I couldn’t get up. So I was off to the ER, when I got to the ER they started doing CT scans of my lower back. The first CT scan came back normal. They did 2 more 12 hours later at 2 in the morning of my upper back, neck, and head. In which also came back normal. Now Dr. came in and informed me I needed a spinal tap. For the first 2 spinal taps they weren’t able to get enough fluid. So they had to do a spinal tap robotically with an X-ray assistance. At this time it is 4 P.M. on the 8th.
As I sat in bed in the ER I tried to eat a chicken sandwich and for some reason, I couldn’t chew. Now I am getting scared can’t walk, can’t chew??? At this time doctor came in and said I might have GBS, and I thought okay because I didn’t know what it was at all. I got admitted to the hospital and right away to started the IVIG treatment for 5 days. After that there was no change. At this time, I was paralyzed from the rib cage down as well as all the muscles in my face. Worst pain ever! Next step was the plasmapheresis for the next 5 days and there was no change once again in the pain level or feelings in legs or face. At this point the hospital had no other treatment so they were going to release me and I was still in the worst pain of my life. My wife found a rehab facility so I got transferred there. The date is now July 20th, i was at the rehab facility for 4 weeks and started working to strengthen my core as well as speech therapy to get my legs and face muscles working again. But still had very painful days and nights because we were still working on pain management. I was released on the 14th of August and felt good but on the 21st I went back to the ER in sever pain and they found a blood clot on my lung. So now I couldn’t rehab until the blood thinners controlled the blood clots. Today is September 6th My legs are getting stronger little by little but I still can’t walk and my face is getting stronger but still can’t close my eyes all the way and getting my speech back. I am still in a lot of pain my feet, hands, and lips are numb all of the time and they hurt still. I am starting to do PT again 2-3 times a week but I still have lots of leg pain and trying to get off the meds. Right now I am still on 30mg of Morphine twice a day, 800mg of gabapentin four times a day, as well as a bunch of others. That is my story and I would appreciate any help or suggestions to get me through this with the pain and mental frustration I am going through now.
Thanks for listening,
September 6, 2021 at 5:01 pm
I have some info that might be useful to you. 2004 I came down with GBS and Spinal Meningitis after orthrogantic surgery – where they remove you lower and upper jaw, cut up the lower jaw and fit them both back together. Shortly after my feet and hands got cold, ass numb, and by day 7 I was in a wheelchair. I was air-medivac from Alaska to Madigan Army hospital outside of Seattle. I had terrible leg pain – leaving the hospital I was taking 180+ Percocet’s 5mg a month, then switched to Tramadol after a year….. dialed one down and the other up. 17 years later I can walk and sense of touch is fine, but, still doing 4-6 Ultram/Tramadol a day for leg pain.
First – get the hell off that gabapentin. Right now! Docs put me on that to replace the Tramadol and that crap made me into a zombie. I would fall asleep at the table. Fall asleep watching tv. Worse yet, I would ‘go out’ for 3-15 minutes and ‘come back’ not even knowing it happened. At home, I would leave a trail of destruction behind me… peanut butter jars not closed or put away, knife with peanut butter not put in the dishwasher and bread not put away, LOL. Wife said it was like living with a 7 year old.
Second. Have faith, things will get better. I used to be an Olympic class military shooter – pistol and long distance rifle – I lost that, but, so far it’s the only thing. I’m still good enough for hunting and fun shooting with friends, but, I wont be showing up at the state championships anymore. Considering the basket case I was when GBS hit – I think I got off easy.
When I got my Covit shots – I stashed extra cash with the family and paid all the family bills forward thinking I would have a reaction like yours and end up back at Madigan….. especially since having GBS prior. Nope, no problem. I didn’t even get boo boo arm.
Last. Don’t panic. It will get better. My wife put me on allot of homeopathic ‘nuts and twigs’ stuff that I know helped me allot. If you are interested, reply, and I will have her tell me all the weird nerve helping over-the-counter stuff was.
On a funny note. I am a retired chief, E-7. When they flew me into Madigan I was sick as a dog and they entered me as O-7, Admiral. At first I thought it was just the Army giving me a hard time calling me “Admiral” all the time. Come day 4 when I was feeling better I collared someone on it. No matter what the docs and nurses did, they could not make ‘Admiral’ go away! I actually had the General show up and ask if he was speaking to an Admiral of a chief, LOL. 4 weeks I stayed as ‘Admiral’ in the system. I am very, very happy I went to Madigan…they had 7 neurologists on staff and the town I live in, although the 3rd largest in Alaska, only had one.
September 13, 2021 at 12:01 pm
What a rotten story!!! You’re correct though. You are not alone. I’ll give you my reader’s digest version of mine.
December 7, 2020 I was admitted to St.Peter’s hospital in upstate NY. I was diagnosed with GBS and spent a week there and then another 4 weeks at Sunnyview Rehabilitation Hospital. I really had no run up to this. Felt fine the morning of 12/4 and paralyzed by night of 12/7. All the same numbness and tingling everyone speaks of. Couldn’t speak well, couldn’t swallow well and balance/strength were non-existent. Same scary stuff we all went through and never heard of this condition in my life. I had 12 units of IvIG in the hospital and it had an immediate effect on me. I found out later that my hospitalist had informed my wife that they were going to vent me (in the absolute crush of CoVid cases at the time) but when he came in to tell me I had just received my first bottle of IvIG and Imoved my left foot a little. I was trying to move my right foot but I’ll take what I could get. My onset was due to a flu vaccination on 11/17. I have been advised to this point to not get the CoVid vaccine.
I am happy to tell you that I am walking, working, driving ( a huge win as severe double vision is still a symptom I am dealing with) and doing well at home. I am still quite numb. My reflexes are better but still not great. My balance is absolute garbage but I manage. I have unbelievable tightness that keeps me from getting deep breaths without extra effort and it also compromises the timber and projection of my voice. Not great for a salesman but again, I manage.
I’m coming up on a year with this now and while I’m better than I was I am not where I want to be. I’m looking into visiting one of the centers of excellence listed on this site. Do your best to stay positive. It can be rough at times but when I get down it seems like it exacerbates my symptoms and I just lose time to extreme fatigue. I can’t find the formula for what I can do before I’m exhausted. It seems like a moving target. I’m rooting for you, and everyone else dealing with this. Hope this helps a little and best of luck to you.
September 20, 2021 at 2:19 pm
I was up to 80mg. of oxycontin my first 3 months of dealing with gbs pain. I was able to replace that with 3-5 grams of good old kratom within a week. (Taken every 3-4 hours.) That was about 2.5 years ago. I have permanent finger and foot pain still. Just an uncomfortable tingling and numbing sensation. My one foot still feels like it’s in a block of ice. As of this date I get by on 3 grams of kratom twice a day. It will make you vomit if you over do it. Stay away from lyrica, unless you would like to develop uncontrollable twitches over time. I use cannabis too. Some strains work well, others can aggravate it.
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