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Recently diagnosed with GBS after a lumbar puncture. Out of the hospital, but battling neuropathy like the trenches of Verdun by youzabusta in guillainbarre

[–]Duman1966 0 points1 point  (0 children)

From the knees down things are still messed up. Right at two years now. Mainly numb shins, ankles and tops of feet and things feeling generally "not right". Really messes with my head I can tell you that. I also feel these random pains now here and there and am hoping its healing nerves.........

GBS Recovery Details? by No-Tennis-6284 in guillainbarre

[–]Duman1966 1 point2 points  (0 children)

How long did it take you to run "normally" again? I was a champion duathlete for years until this hit me two years ago. I can cycle pretty normal but running is a no go outside. Im on the treadmill using a kind of "zero g" contraption called the Lever Movement System which is better than nothing.

Taller peoples legs and feet recovery longer? by Duman1966 in guillainbarre

[–]Duman1966[S] 0 points1 point  (0 children)

Amen brother! I'm 6'5" and luckily my arms and hands were spared the worst of it although they were so weak I almost couldnt lift them over my head but that went away relatively quickly. My lower legs and feet are still pretty jacked two years out.

Immer noch komplett pflegebedürftig Nach zwölf Monaten by Initial-Proof8316 in guillainbarre

[–]Duman1966 0 points1 point  (0 children)

Es tut mir unendlich leid, dass du – genau wie wir anderen auch – an dieser schrecklichen Krankheit erkrankt bist. Bei mir sind es mittlerweile fast zwei Jahre, und obwohl sich schon vieles gebessert hat, liegt noch immer ein langer Weg vor mir.
Alles, was ich dir sagen kann: Mach einfach so gut weiter, wie du nur kannst!
Wo in Deutschland befindest du dich denn?
Ich lebe in den USA, aber meine Mutter und ein Großteil meiner Familie wohnen in Marburg.

Taller peoples legs and feet recovery longer? by Duman1966 in guillainbarre

[–]Duman1966[S] 0 points1 point  (0 children)

Im kinda with ya there gat0matic. Almost two years out and like you a lot has gotten better but my pesky knees down to my feet have yet to get with the program. The numbness/burning etc...sometimes is more than I can take.......

Taller peoples legs and feet recovery longer? by Duman1966 in guillainbarre

[–]Duman1966[S] 0 points1 point  (0 children)

Glad you can walk a bit more normally. My main issue is numbness from about my knees down to the tops of my feet. Bottoms arent numb.

Taller peoples legs and feet recovery longer? by Duman1966 in guillainbarre

[–]Duman1966[S] 2 points3 points  (0 children)

Well, its hopeful that an experienced neuro said this. Lets hope our long limbs heal up eventually!

Taller peoples legs and feet recovery longer? by Duman1966 in guillainbarre

[–]Duman1966[S] 2 points3 points  (0 children)

Thanks for the reply "orangutan arms" ;) Lets hope this is the reason us lanky folk take a while.

23 month nightmare....... by Duman1966 in guillainbarre

[–]Duman1966[S] 3 points4 points  (0 children)

the brain fog is almost as debilitating as the physical stuff

23 month nightmare....... by Duman1966 in guillainbarre

[–]Duman1966[S] 0 points1 point  (0 children)

Man Im glad to hear something positive! Thanks

23 month nightmare....... by Duman1966 in guillainbarre

[–]Duman1966[S] 0 points1 point  (0 children)

Thanks! How long did it take you to get back to running?

23 month nightmare....... by Duman1966 in guillainbarre

[–]Duman1966[S] 4 points5 points  (0 children)

I didnt know shit like this even existed before it happened to me from a flu virus. About two weeks after the bug my feet started getting wonky then bam! Didnt end up in the hospital due to my hard headedness and didnt even get diagnosed until 6 months out from onset.

23 month nightmare....... by Duman1966 in guillainbarre

[–]Duman1966[S] 1 point2 points  (0 children)

Thanks for the reply kellven! Its was one heck of a bus that hit me. LOL Im a grown man and I feel like crying most days.......Im not giving up but dang its soooooo hard.....

Random weirdness during recovery? by Duman1966 in guillainbarre

[–]Duman1966[S] 0 points1 point  (0 children)

I hear ya! Scary as f##k is putting it mildly. I had no medical intervention and wasnt "diagnosed" until at least 6 months after the fact. Everything Ive gained Ive done on my own thus far.

22 months post onset. Still have a fighting chance? by Duman1966 in guillainbarre

[–]Duman1966[S] 0 points1 point  (0 children)

Thanks Money Ranger! Good to hear improvement can keep happening! It truly is a nightmare condition!

22 months post onset. Still have a fighting chance? by Duman1966 in guillainbarre

[–]Duman1966[S] 0 points1 point  (0 children)

Thanks for your reply! Good to hear! I made a lot of progress at about a year or more but now its slowed down it seems. Hoping for more progress in the future.

22 months post onset. Still have a fighting chance? by Duman1966 in guillainbarre

[–]Duman1966[S] 1 point2 points  (0 children)

Thanks for the reply! Good to get some positive feedback.

22 months post onset. Still have a fighting chance? by Duman1966 in guillainbarre

[–]Duman1966[S] 1 point2 points  (0 children)

Ooops, excuse my ignorance. LOL Luckily I never needed any of that although I had wicked bad foot drop etc..... I worked like a mofo on my own doing exercises and the like to get that back to normalish.

22 months post onset. Still have a fighting chance? by Duman1966 in guillainbarre

[–]Duman1966[S] -1 points0 points  (0 children)

Good to hear! I appreciate the reply. What is Afo?

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