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  • May 24, 2022 at 4:26 pm

    Some days it feels like my achilles tendons are about ready to snap because they are so tight.  Usually this happens more frequently during the winter months for me. I have the AMSAN variant of GBS which apparently is very rare.

    May 24, 2022 at 4:13 pm

    I am 8yrs post onset (AMSAN variant of GBS). I had really bad balance issues. I had surgery on my c-spine and my balance improved some. I have degenerative disc disease & osteoarthritis on top of the AMSAN. I just do pt at home and have to wear my brace or use my rollator for distances over 1/4 mile

    November 12, 2020 at 12:02 pm

    My achilles feel tight a lot especially if I slack on stretching them out

    August 15, 2017 at 1:12 pm

    nairbear62 I am in Hannibal Mo burt by neuro is in Columbia Mo

    August 13, 2017 at 8:59 pm

    Were your hands first to go numb? They said my feet would be the last to recover for me. My journey started 6/14 and I am stil working on walking fast. I was paralyzed from feet to top of my head.

    May 30, 2017 at 10:45 am

    Jim-LA I have that forum saved as a favorite lol

    May 2, 2017 at 12:30 pm

    The two previous neuros spent 5 mins with me and were going off an MRI done in 2015. I saw them both in 2016. I really feel they did not do a thorough exam of me to be honest

    March 1, 2017 at 7:57 pm

    Ron I had an EMG done a year after I was diagnosed. It didn’t hurt too much and I discovered my feeling in my hands was actually worse than I thought it was. I felt I had full feeling back but it was abd still is missing in my fingertips

    March 1, 2017 at 7:52 pm

    Seems our little group is growing. Haven’t been on here for a while. I have AMSAN variant. I’ve been watching my very energetic 18 mo old grandson m-th for a month now and just started driving when my feet will allow. The residuals are just now starting to really bother me ( diag May 2014 home Feb 2015). I’ve been a lot more active and on my feet more with the grandbaby here, he’s very motivational. When he leaves I rest up for the next day.
    I still take gabapentin 2x a day and oxycodone as needed (rarely). I’ve never been put on prednisone or had weekly ivig treatments. I do my own home therapy also.

    July 23, 2016 at 7:11 pm

    Try your vocational/ rehabilitation center.If they can’t help they maybe able steer you in the right direction

    July 23, 2016 at 7:06 pm

    I take a Super B Complex vitamin. I also have been know to drink the B12 energy shots. They seem to help out on my really tired days

    July 23, 2016 at 7:04 pm

    I was totally paralyzed.I was in a medical coma for a little bit. I was on a respirator ( died and had to have emergency trach) until late July. My eyelids had to be taped shut so my eyes didn’t dry out. I started regaining arm/ hand functions slowly in Aug. I was able to move my head in late July. I am happy to say my grandson and I are learning to walk together. I can walk for 20 mins max before muscle fatigue or lower back pain attack. I am doing so much more now than I have ever done before.

    July 23, 2016 at 2:35 pm

    My symptoms progressed rapidly over a week. My initial diagnosis was AIDP, then AMSAN last year. I still have the muscle fatigue and mostly manageable pain in both feet. I am pretty much fully functional motor skill wise. I’m working on correcting drop foot issues mainly in my left foot. I just started mowing my yard with a push mower this summer, so there is hope. It just takes longer for our special group. My journey started May 19 2013 and I find myself doing more and more each month

    June 13, 2016 at 7:17 am

    Julie I would prefer the manual device simply because it would enable me to o strengthen my hand/finger muscles

    August 3, 2015 at 10:51 pm

    I have this too. I take gabapentin for nerve ending pain & tizanadine for spasms. I see my PCP and my neurologist released me back in May. If my feeling in my feet hasn’t returned by the end if this summer then I will schedule follow up with him. GBS is a learning experience for sure