Permanent muscle atrophy/wasting after GBS

    • September 8, 2021 at 11:08 pm

      <p class=”_1qeIAgB0cPwnLhDF9XSiJM”>I had a minor form of GBS back in December 2009 ( I was 13 years old) , despite being almost 11 years since this happened, I have muscular wasting on my arms (wrist area) and calves which I was never able to recover despite exercising, going to the gym, physiotherapist, etc. Alongside the wasting I have minor tingling sensations and slight weakness, which do not really annoy as much as the wasting to the point where I avoid wearing short pants for example. My wrist area and calves area are skeletal</p>
      <p class=”_1qeIAgB0cPwnLhDF9XSiJM”>From the majority of testimonies I’ve checked most people did recover their muscle mass after a few months, I’m curious if someone else has had a similar experience to me.</p>
      <p class=”_1qeIAgB0cPwnLhDF9XSiJM”>GBS was minor in my case, I was only hospitalized for 2 days (only my feet/lower leg area was paralyzed) and I believe I was able to slowly walk in a matter of 2 weeks after I left the hospital. Despite how minor it was in my case compared to others, I probably will carry with me all these collateral effects that I explained above for the rest of my life. Thankfully, this has not prevented me from doing sports I like and other activity.  I could do 100 jump ropes in a minute, just to provide context that despite of this I can pretty much do any sort of exercise.</p>
      Is there any sort of therapy, supplement, etc that could help with my condition at this point? I feel that I will never give up on recovering from the muscle atrophy

    • September 9, 2021 at 12:06 am

      As far as for telling the difference between a CIDP related weakness and muscle atrophy, CIDP weakness (Myelin damage) is usually accompanied by tingliness, numbness, and unusual sensations like zingers, crawliness, sometimes itching. Muscle weakness without these associated symptoms is less likely to be CIDP, but not everyone has the same experiences with this disease.

      There are many discussions about supplements in these forums. Here are a few that might be helpful:

      Alpha lipoic Acid

      Vitamins and supplements for CIDP

      Nerve Regeneration Protocol

      Deficiencies of vitamins B12 (Methylcobalamin 5000MCG) and D3 (125MCG, 5000IU) have also been known to be involved with CIDP-related muscle atrophy and some members have cited taking such supplements as helping improve their condition. More info here:
      https://forum.gbs-cidp.org/topic/b-12-deficiency-amp-cidp
      https://forum.gbs-cidp.org/topic/vitamin-d

    • September 9, 2021 at 12:48 am

      BTW were you diagnosed with MMN? If so, please read about it:

      MMN anyone update on here with it?

      • September 9, 2021 at 1:03 am

        Hi there,

         

        Thank you for your answer. I had a nerve conduction test back in 2014 and the results showed residual myelin-axonal damage, CIDP does not damage the axons right? So based on what the neurologist told me, it’s GBS sequelae and I was told my body would keep recovering and eventually I would regain my muscle mass but its now 2021 and it never happened… I’m trying research if there are other options for me that are worth trying… It’s been 11 years since my GBS (AMAN) form apparently, I also weigh 185 pounds so that is not the issue. My calves and wrists/forearms remain extremely thin, I am 25 years old at the moment

    • September 9, 2021 at 8:08 pm

      CIDP does damage the axons. The pathological hallmark of chronic inflammatory demyelinating polyneuropathy (CIDP) is segmental demyelination and mononuclear inflammatory cell infiltration in the peripheral nerves, accompanied by varying degrees of axonal degeneration, myelinated fibre loss, and endoneurial oedema.

      My axonal damage has landed me in a wheelchair. Once a semi-professional tennis player, now a paraplegic.

    • September 13, 2021 at 12:55 pm

      Don’t give up. It’s amazing the healing powers of the body with the right approach.  Especially if you are still young!   I would suggest finding a better Gym teacher and workout facility.  It’s your attitude that cures you.