Balance Problems with GBS

    • March 10, 2022 at 2:49 pm

      As I have aged (69)started having balance issues. Stared getting  worse about year ago. Went to Hearing Balance Dr. MRI nothing, therapy little to no help. Now  off to see a  neurologist in April. I am a   runner and seen my  times increase over this time period a lot. Went from running 10:00 minute mile to a 14 or 15 minute mile  and balance is most of the issue. Has anyone else had balance issue well after GBS.  I had GBS Dec 1989. 4 months I was pretty recovered. I was ok to recently. Also hand writing has gotten  bad.

    • March 10, 2022 at 4:01 pm

      Balance problems are one of the many CIDP/GBS residuals. Usually, the extremities like lower leg muscles (foot, toes, ankle) are the areas affected by the residuals. Additionally, vitamin B12 deficiency can bring on balance problems too, along with other symptoms. Vitamin B12 (Methylcobalamin) 5000MCG (I daily) could be indicated if a blood test shows deficiency.

      The balance exercises often recommended by physical therapists can include:

      • walk sideways for 15 steps one way then the other
      • walk one foot over the other for 15 steps (first one foot then the other)
      • walk one foot in back of the other for 15 steps (one foot then the other)
      • walk forward heel to toe for 15 steps in a straight line looking straight ahead
      • walk backward the same way for 15 steps in a straight line looking straight ahead

      Wear an AFO on your leg when you do these, so these are not so easy with AFO and balance problems.

      Others may have different advice based on their experiences, so stay tuned for their inputs.

    • March 12, 2022 at 12:31 pm

      Hi Jim,

      Sorry if I sound like an idiot.  I thought AFO was for foot drop ? I post new topic today on post covid cidp exac. etc.  My docs, if you trad my post  seem to have tunnel vision, not to mention the complete lack of interdisciplinary communication.Had afo only when in was live in rehab with foot drop..never suggested for balance, just walker, cane.  I have read your story. You are an amazing person and your tenacity is an inspiration to me and many here I have read about.


      Thank You



    • March 12, 2022 at 2:55 pm

      Hi Pammy and thanks for your nice comments! Here is a definition of AFO that better fits my use of the term:

      Ankle-Foot Orthosis

      Abbreviation: AFO

      Any of a class of external orthopedic appliances, braces, or splints devised to control, limit, or assist foot and ankle motion and provide leg support. Typically, orthotics are made of lightweight materials such as thermoplastics.

    • March 12, 2022 at 3:19 pm

      So who do I see for that ? Orthotist. I can walk, just don’t have balance, need walker, can only walk short distances, like in the house since I got covid.
      I posted a new topic today, on general forum. Topics ” Helps Cidp exacerbation
      post covid 19″. Can you check that out ? I would be so grateful for you even
      having the patience to do so. I have read your story since I joined this group,
      and read history of your journey. I can recite all the protocols, not that I know which is beneficial to me at this point, as I cant get a doc at a Center of excellence, that are just not so excellent here anymore since covid killed this city TO LISTEN TO ME ! I live alone am on my own, responsible for 96 yr old mom post stroke 5 yrs. live in help, constant stress, she is all I have though.
      Friends slowly disappeared after covid. My post elaborates. God Bless you.
      You have the strength mentally I pray for.🙏🏼

    • March 12, 2022 at 4:08 pm

      Jim thanks for the reply and answers. So sorry you and Pam had so many  issues with GBS. I guess I have been pretty lucky to be back to normal. It is only been downhill in last year. After getting GBS 1989 recovered  mostly after 4 or 5 months (37). I was wondering if anyone had similar things happen to them.   Now at 69 I seem to be having problems. I am not sure if it  is GBS related or something else nerve related?   opinions??

    • March 12, 2022 at 4:30 pm

      I have CIDP..could  be more lost.  Sorry

    • March 14, 2022 at 7:22 pm

      I  contacted GBS-AMAN 41/2 years ago and still have difficulty walking and lousy balance.   My neurologist has told me at my last visit this might be as good as I’m going to get.  Hands and legs are still weak with drop foot on my left foot.   I use AFO’s  on both feet when ever I go outside along with a cane.  They help me with my balance and help with lifting my legs.  I cannot stand without swaying for more then a few seconds.  Other then these distal problems I’m pretty healthy.  At 75 years old I feel fortunate that I am self sufficient and have learned to adapt to my new life style.

    • March 14, 2022 at 8:49 pm

      You are better person than I.  What type of afo do you have ? Do they go in your shoe ?  I don’t have foot drop, horrible sensation in both feet so cant feel floor to get brain feedback for balance. My feet hurt so much, sox hurt, any shoe  excruciating without AFO. I need more balance or I need walker. Im mid fifties. Was healthy, athletic, health professional, 25 yrs.  Broke ankle, had surgery, 3 months later in wheelchair cant feel hands….so Im not grateful, I feel my life was stolen from me.  Pain 24/7, cant drive, work, play sports, have my dogs, cook for myself, vacation, walk on beach, ride a bike.  I was much more functional before I got covid, Major setback. I wrote new post yesterday in general forum on this regression. What treatments do you get ?

      Thank You







    • May 5, 2022 at 4:37 pm

      I developed GBS in 2015 and relapsed a few months later. Neurologist told me I now had CIDP. Also have balance issues but am now up to walking with two games (or one sometimes). There is no running in my future. IVIG every six weeks and daily dose of Lyrica to help with lower leg and arm pain.

      Have tried all the add-ons to no avail. Neurologist told me to try Yoga or Tai-Chi. Instructors do not want me as I am told I am a liability. Have used some videos but cannot hold standing poses. Also find it very difficult to get off the floor for sitting or lying poses.

      I have come to accept that I will never be the same.

      I do continue with chair exercises using bands and light dumbbells, walking the hallways in my building and Yoga breathing exercises as I lost 50% – 60% of breathing ability with the first GBS episode (now close to normal with 94% to 98% oxygen readings). My PT revered me to a foot doctor who gave me some of the exercises above. Tried them for a few months but little or nothing positive.

      Here’s hoping you have better results.

    • May 5, 2022 at 9:07 pm

      Wish I had some positive advice. My situation is still as above.

      I don’t have GBS, never did, have CIDP, don’t know where that came from.

      For balance, if you go to PT facility, they have a board with a sort of

      ball attached to bottom of it, and if you balance yourself on top of that board

      positioned between parallel walking bars to prevent fall, when you get back onto

      stable floor, balance is better..,.the instability while on the board, retrains the


      What do you use for comfortable socks or sneakers or slippers.

      Bootie indoor outdoor slippers been using are wearing out out.

      My toes are hammering from foot muscle imbalances, so most

      footwear is intolerable.


      Thank You

    • 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