I have issues 43 years living with Gullain Barre syndrome.

Bones, joints and muscles
1

Hi,

I was diagnosed with GBS in 1974, I now 55 years old. I had no fancy treatment, hospital for 4 months, walked again at 1 year, and endured 8 years of Occupational therapy and physical therapy. I was left with lower residual weakness, no calf muscles, ankles very weak. I did not see neurologist until I was in my early 50's. I was determined to go on, suck it up and live life. I had 2 daughters, no issues with pregnancy other than being careful of my stability in walking. Since the illness, I've never ran, step on tip toes or wear and high heels. I'm a boot girl to give me Support. I've been employed for 35 years at same company and feel very blessed! While I never felt defeated through the years, or I never let it definitely me until now. I walked on sides of my feet to compensate for muscles that never came back. I walked with gait and obvious limp. Through the years I noticed swelling in knee caps and pain when I over walked my legs. Just sore & tired legs and pain. Fatigued too. As of December 2016, my condition has deteriorated to the point where I had horrific pain in knee, right worst than left. 5 doctors later, EMK test, MRI, X-rays. The cartilage is basically non-existent, bone on bone and full of arthritis. I have to use cane, fall often and am very, very unstable. I guess my knees, quad muscles were my saving Grace all those years. After 42 years of walking , compensating weak muscles with stronger ones,, it took a toll on my knees. I will be getting gel injection next week. But probably new knee replacement in future, but will it work? I'll still have same legs, weak muscles...... I cannot afford to lose if it doesn't work. Any ideas or suggestions if anyone w/ GBS has similar delimina, I would love to hear, talk ,I need

Advice. Thanks in advance for your time and help in this matter. Sorry so long..

2

Hi Terri

Long posts are great, because they contain a lot of useful information for anyone reading them.

I have never heard of your illnes, and it sounds like you have been quite challenged throughout your life - you must be a very strong lady.  

I am having TKR next month, and have had a similar concern.  I have known my whole life since i was 19 that I would need replacements ion both knees due to having had an accident, breaking both knees and several surgeries over the years to repair and maintain until I reached the age it was suitable to replace them.

As a result of the accident, I have a lot of arthritis throughout my body, but primarily my knees and feet which took the brunt of the impact when I had my accident.  This was in 1979 and I was 19 - I am now 57.  I got the symptoms from Arthritis quite young - starting about about 38 years old.  As a result, I too have walked on the sides of me feet - because the pain in my big toe and the one next to it are super painful to walk/stand.  Now, my foot has morphed to compensate and there is now a natural division between my two big toes, and the three on the outside.  Weird.  Anyway - my gait is not normal either, and I have worn my knees down just as you described.

I mentioned it to my surgeon, and he said I might even see a benefit to my feet - I will have to see it to believe it, because after failed surgery, they have been painfeul for years, despite various treatments.  

I said I was worried that my unnatural gate will be an issue when a new knee is fit - that it will wear the metal away quickly and incorrectly.  He did not seem to think it was that big an issue.  But it does concern me - because like you say, if the TKR fails - then what??    

I know its different than your sitiuation - but I just wanted to lend you some support, to say hello, and let you know you are not alone in your worries.  

There is loads of information here - and some great advice from those through it, which may be more helpful than me - but I just did not want to read and run.

Good luck - keep posting.    x

(are you in the UK?)

3

Wow, what an amazing person you must be! I don't have any personal experience of your condition, but I would hope that the body would adapt? My quads were very , but since TKR I am amazed at how much stronger that leg is. My quads did Take a few weeks to activate fully, which i did find worrying, but the knee joint changes do appear to have benefitted my whole leg.

4

Terri so sorry to hear about your condition of Guillian Barre and now knee pain, bone destruction! The gel shots had before Right Knee MRI was I keep telling the doctor the pain was unbearable yet they chose gel synvisc after a while I went to my PCP and he order a MRI I had a tear on the meniscus and a leaking Baker's cyst therefore I was in pain longer then I should have been! The gel made that knee pain worse! Several people I know have had success with the gel! If you need a new knee it will be painful and difficult but it will be better! I had a right partial knee replacement doing okay stillmpain after 8 weeks!

5

Thank you and good luck to you. I am in Michigan. Still completating TKR. Sometimes I feel pushed by orthopedic doctor/surgeon to have it done. While I do not want to live this way, I must research to know if I can do this? Any PT on this forums that can expound on this?

Thanks all!

6

Hi, thanks for your input! Yes the gel did not work at all to improve the knee. I also have bakers cyst that they don't seem concerned about. But sometimes I have dripping wet sensation down my calf, so real that I touch it, but there is no liquid. I asked my orthopedic Dr and he said highly unlikely that anything is leaking. But yet he cannot explain why the sensation....

7

I also had tear in meniscus, had Ortho scopic surgery May of this year to repair. Still pain and buckling of right knee, it's very "ah ha" moments and gives me high anxiety, for fear of falling. I also have terrible swelling in both knees and right foot, calf area. Need to address some of this before any major surgery is MY goal. Also I need vascular Doppler on ankles as PCP could not get pulse.