Yesterday makes four years

May 11th makes four years since my bout with GBS. Completely paralyzed, I am about 85% recovered. I don’t think there will be anymore improvements to come, but that’s ok. Only thing left is the slight tingling and numbness on both feet, my weak core strength and fatigue. Been the same for over three years.

How wonderful! Congratulations! May I ask your treatments or therapies that brought on the improvement? I have a confusing situation in that I just dropped to the floor 4 years ago, totally paralyzed from waist down. Physicians at that time felt I had GBS and they started IV antibiotics for 2 days and then gave me 3 out of a proposed 6 IV infusions of Ig. They cancelled the remaining 3 treatments as I was showing no improvements except for the left big toe which moved once on the 2nd day of treatment. They send me to a larger regional hospital with a large neuro component in it where I was re-evaluated with the same diagnosis and they began 8 treatments of plasmapheresis (dialysis of the body’s blood to eliminate antibodies harming the immune system). Again, the treatments were cancelled after the 3rd one as blood results showed no improvement. Saw a new neurologist and he said I had a broken neck, which was verified by scans, so had my 5 out of the 7 neck vertebrae reconstructed. The tentative cause was the use of prednisone decades earlier to fight my COPD (lung disease). I came out of the neck surgery not only in the same condition I went into surgery but also with the loss of my left (dominant) upper extremity. Now my NEW physician group feels I probably had BOTH GBS and the broken neck at the same time. Because of all the monkeying around trying to figure out what to call my diagnosis(es), these physicians wasted 21 days before finding the neck problem and thus all those crumbled bones laid on the top of my spinal cord and caused massive damage. I will never walk again. But - if I could feel better from the GBS, it would be so much better for me. Please - tell me what worked for you to get 85% improvement with GBS? I would be so grateful…Karen Fortman, thanking you in advance.

Congrats, Spencer! You are such an inspiration. Just wondered if you were on a ventilator at any time. I had a milder case and have my 3 year coming up. I think it is amazing you have come so far. And Kellogg sorry for your tough time with your diagnosis. I had a hard time with that too but luckily had a milder case that could still heal without treatment. I think I would have suffered less and maybe have less lingering damage though.

Hi Spenser

I’m just two years out. I got GBS twice within two months. The first time I could “walk” out of the hospital with a walker a month later I was was spaghetti from the neck down but no inhalator. Then I had 7 weeks at a rehab home and again could walk out with aid, then 10 weeks of intensive physio…could walk out without aid and now continuing rehab training twice a week. I figure I’m about 90% back to normal. I still have the same things bugging me that you mentioned but I walk without any aids now albeit not for more than 10 min. without having to take a pause. I’m doing my best to shed a few kilos which will help my energy.
Sometimes I wonder where GBS stops and old age begins. You didn’t say how old you were.
Even though there are no more of the big WOW moments I can still see progress taking place and that is entirely due to my training. I’ve just added the treadmill to my exercises which I find very challenging but have been able to up my time from 3 min to 3 min and 40 seconds.
Last year I couldn’t do the treadmill at all. My feet just couldn’t keep up with even the slowest tempo.
I find that careful planning of each day lets me do everything I need/want to.
My advise is to keep training with a physio if possible or a professional to give guidance now and then and walk as much as you can…a couple of more steps each day.

You’re doing so well!

Congratulations Spencer!

Thank you for all the well wishes!

Kellogg – What worked well for me to get me on my feet again was all the therapist, both PTs and OTs working together pushing me to work hard and never give in. I had the usual IVIG treatments. PT and OT started when I couldn’t even move. The whole purpose of it was to get my brain send messages to my body parts to move. I guess it’s called muscle memory.

Tarhealing – Yes I was intubated for 11 days. Came to the point where my diaphragm failed and could not take in enough air. Complications set in after they took out the tube, I came down with Pneumonia.

Xstitcher – I was 56 when I came down with GBS. I’m 60 today so old age may have a synergistic effect. My job requires me to do a lot of walking and standing which makes it difficult for me because after a while my legs feel like jelly.

CanadianGirl – Thank you.

I hope all of you had a wonderful Mothers Day!

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Congratulations Spencer. Stay positive and the power of positivity will carry you to get the final15%
on board. I’m 62 and a newby being diagnosed 7/17/16, then got hit with an infection in my arm requiring surgery which turned into a Sepsis infection and being around 6 hours of my organs shutting down. All in all it took sbout 9 months for my health issues to be improved enough so my rehab could begin in full. I was told it would take 3 times as long as I was down until I’d be up, meaning down 9 months, 27 months to be up walking.
Today I’m 10 months out, walking with fore arm crutches outside and one crutch or nothing in my house. I have my bike on a stand to ride in the house, I lift weights daily, I’m never giving up.
The biggest negative are negative people who tell me I walk with a limp or weirdly. It can make me think this is going to take forever and it gets depressing.
My family jumps in and tells me how far they have watched me come. How amazed at what I’ve accomplished. Heck you are my hero, I’m amazed at what you have and are accomplishing.
Surround yourself with positivity and get that final 15%. Keep us posted please

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I two am four years out. it is to us that has suffered threw this crazy syndrome a huge mile stone. sometimes I wonder why me, I two suffer from fatigue and the forever residuals of this crazy stuff. I was told I am 80 per back too normal. well this I believe is my new normal. I think now, everyday take nothing with my health for granted. just so happy to walk, and live to play with my granddaughter. yea we made it and yes for me it was hard. congrates to all us for over coming this horrible fate. prayers your way and stay well

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Hi! I had GBS in 2009, 8 yrs ago. While I wasn’t totally paralyzed my problem was not a single other Neuro in the large So Cal county where I live would take my case. I blame that solely on the 1 and only idiot Neuro my Internist directed me to see initially who saw me a grand total of 2 times in 7 work days only to pronounce I had “Fibromyalgia” and told me good luck finding any Rheumatologist to take me on as a New Patient as New Pt appts for that specialty take months and months to be seen. Being honest, I told all the Neuro offices I called thereafter what I had been told and No One would give me an appointment. No one. I ended up in the ER x2 with severe neck pain. All the ER MD did was give me a script for pain medication then sent me out the door. Twice. What that resulted in was totally missing any chance of being treated with IVIG or Plasmapheresis (the same 2 treatment options for GBS today, sadly). By the time I finally found a qualified Neuro in another County and saw him it was several months down the road and he told me it was far too late to try any treatment. Yikes.
I too have residual numbness in my toes on both feet. My right side is somewhat weaker than my left (arm, leg) that becomes a bit more exaggerated when I am tired. Once the GBS diagnosis was made it was easier to see a Neurologist. I had considerable EMG and Nerve Conduction testing after the fact. In the midst of the worst, the testing was grossly abnormal. Still couldn’t get any Neuro to take my case. So, I remained at home, by myself during the day, getting weaker and weaker with every passing day. Until one day, it wasn’t quite as bad which is when I knew I had turned a corner/the GBS acuity subsided.
I have had EMG and NCS testing since. Permanent muscle damage was done. I’m right handed and my right side was harder hit than my left.
I ended up taking almost a year’s worth of Outpatient PT, pool and land based, that helped me reach a plateau of sorts. I encourage you to obtain periodic PT services and be very clear in how the GBS affected you. Still, there’s nothing that can undo the damage that was done. My employer required me to return to work on a Full Time basis only which I didn’t have the endurance to be able to do. After 18+ yrs of full time work, ironically for one of the biggest Health Insurer’s in the USA, I was terminated a week before Xmas.I was also forced to apply for Disability as well as a condition of receiving Disability payment. I had to apply for Permanent Disability as well- which I did succeed in obtaining. Ended up with a Disabled placard and having to draw on Social Security many years before I ever wanted to do so. Oh well.
You are right in that once you reach a Plateau re: improvement, that is all there ever will be. I don’t know if you have any residual damage as a result or not but I encourage you to stay as active as you can for as long as you can. Have your MD refer you for periodic PT services to help you fine tune the exercises etc you will need to be doing on your own. If there is a community pool where you live, sign up and get into the water (which is incredibly soothing by the way). Take any pool exercise classes available as you can tolerate- less stress on the damaged muscle groups. If there are any online or in-person support groups available to you, sign up and participate as you are able to do.
Best wishes, L

Hi Spencer,

Glad that you have had so much improvement. I’m 2 years out, 57 yrs young. I also was paralyzed from head to toe. I spent 2 months in the hospital and went to the ER 3 times before they admitted me. I had to have my eye lids taped shut at night because my entire face was paralyzed. I now walk between 4 - 7 miles a day.
I have residual tingling in my feet and hands. My face is still paralyzed. i can shut my eyes now. When i smile you cant see my teeth. My lips are the worst, not much movement YET. When i was in the hospital the Dr’s said i wouldn’t walk out of the hospital. I told them there was no way that was going to happen. I proved them wrong. I walked out unassisted.( still needed a can & walker but after a few months of p/t i was able to walk unassisted). Im still on medication lyrics 100mg a day and cymbalta 50mg a day. Anyone have their faced paralyzed? Still working on my smile.

Regards, ilene