GBS / MILLER FISHER

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.

Good luck!

Kevin

Hi Mike

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.

Scott

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.