GBS without treatment ?

    • January 8, 2020 at 5:21 pm

      Hi there everyone ! I want to tell you my father story and ask if you have been through this.

      On his onset he began to feel pain in his lombar region, and a little pain in his legs similary to a muscle soreness. After that he started to lose power in the both legs within one week. After that he couldn`t walk alone anymore, I was supporting him through the house (He was still going, but very hard). After a “walk” through several hospitals we were guided to go to a neurology hospital where he was immediately admitted. After 2-3 days, a lumbar puncture and an EMG was made. The cerebrospinal fluid showed increased Albumin, Proteins and IgG antybody. The EMG test showed AIDP and after that the GBS diagnosis was made.

      Throughout this period, my father was walking with a cane and the symptoms became stable. The neurologist said that he doesn t need a IVIG or plasma exchange because he was still able to walk, did not completely paralyze no respiratory problems and he will recover in a few months. I do not know what to believe because the treatment is expensive and they told me the IVIG is given to the very affected patients who cannot walk. I think his GBS disability scale was 3, and he was between moderate affected. I don`t know if this “treatment protocol” is only in my country, wich is Romania, but they convinced us that there is no need for treatment and he needs to start recovery.

      We started to do recovery in a hospital for about a month and a half. After that we came back to the neuro hospital where he was diagnosed for another EMG. This second EMG showed an increase in demyelination and decreased nerve amplitudes but the symptoms did not get worse. Doctors have been thinking a lot about a CIDP or a relapse of AIDP because of the last EMG results. They decided to keep him hospitalized to be in the worsening observation of his progress. His clinical process was always in the plateau phase despite the EMG showed worsening and after all the doctors concluded that it is not a aggravation of his GBS to CIDP and they told us to continue recovery with kinetoteraphy and this will last 6-12 months on maybe more, it depends on each one.

      Now I see little improvements on his walking, his ability to climb stairs. He gained some muscle strength and little balance, but he is not able to raise on his tips, only 2 cm. Since his onset he is having his fingertips numb and the sensation of a bilateral tight stockings (no numbness on his legs) on his half of the calf, but now this sensation has only remained in the right leg where he is having a little more foot drop than the left foot. He is still able to do dorsiflexion but not completely and his ankles joints have became stiff. Now he feels tightness in this area more on left than on the right foot. I think it`s a problem of his dorsiflexion tendons, tendinitis maybe?
      This area i`ve highlited become more stiff when he is doing exercises for his foot.

      Now i`m asking you: Do you have experienced something like this? What the doctors in your country say about the treatment? Can the recovery can be successful without IVIG or PE ? How long for you ?

      Thank you !

    • February 4, 2020 at 10:12 am

      I am 65 and 14 months into my GBS illness. I just started walking without a “walker” at about 11 months. Have been exercising on a tread mill using the arm supports to lessen the foot pain. I have been taking Lyrica for the nerve pain which is worse in my feet and then my hands. I had twice as much nerve damage on my left side which I am grateful for, because I was able to escape having to use a wheel chair. I did not respond to IVIG at all. Never tried PE. Your father received much better treatment than I did living here in San Diego, USA is all I can tell you. Lots of bad doctors here.
      They have a few centers dedicated to this disease, but good luck getting to one. I would try contacting one of those.

    • October 18, 2020 at 7:24 pm

      Hi Jon. Thanks for your reply, and sorry for my late response. How it`s going for you now ?
      My father have recovered a lot more after 1 year from onset. He is able to walk without support for about 100-150 meters concentrated and at a medium speed, until his legs starts to get tired and he loses a little of his balance. Almost everyday he is bewildered in random moments and he feels a strange phenomenon when he walks. His says that his foot fatigue climbs up to his head, strange. Usually in the evening he feels better.
      Last month we had a EMG which showed an improvement in CMAP (lower latency, higher amplitudes, etc) and the neurological examination was good.

      Although hand reflexes appeared half a year ago, those on the legs are still abolished, but there is no question of CIDP, says the neurologist.

      Another strange symptom that still persists is that after walking or after doing kinetotheraphy with me or even in random moments is that his legs starts to feel tensed especially in the calves. He is not feeling tingling or numbness.
      Have you anyone experienced this kinda of symphtoms ?

      Thank you and I hope the best for all of you !!!

    • November 1, 2020 at 4:46 pm

      I’m close to 2 years into my gbs/cidp/diabetic neuropathy? Personally I think it is all three. I just read that there is some weird diabetic neuropathy disease that 1% of diabetics get that matched my initial symptoms of being a lot worse in one leg, with extreme pain in the thigh. Thank god the thigh pain did leave after about 6 months. I still get bad foot and hand pain flare ups. I avoid lyrica now, due to side effects. I dropped the use of cannabis also for same reason. Just lots of hot baths and advil, and some kind of mental spiritual practice to keep sane. I wish your dad the best!

    • December 26, 2020 at 7:41 pm

      For how long have you had leg pain, Jon? My father’s legs ached about 3 months after the onset, then the pain disappeared. Have you had tingling and numbness in your hands and feet since the onset of the disease? What stage is your muscle strength in now? Can you walk alone?

      • July 6, 2021 at 9:04 pm

        Yes, I can walk with a mild limp.  Non stop numbness in feet and 1 hand.  I can easily walk a 1/2 mile.  After that without a rest, I start limping badly in one leg.  I do my own therapy.  Very few doctors I trust and even fewer physical therapists.

    • March 17, 2024 at 11:03 pm

      Hi my name is JudeP

      I contracted GBS in 2000.  I came out of back surgery and, in the recovery room, the pain was so bad they didn’t know what to do.  My neurosurgeon called in another neurosurgeon to consult on what was wrong.  They went back into my back to see if there was any problem and found nothing wrong.  They woke me up and said that I had a rare disease that was GBS.

      I was under so much pain medication that I don’t remember any of the first couple of weeks of recovery.  I was paralyzed up to my mid chest in full pain.  After months of rehab in hospital, I was still somewhat paralyzed when I went home.

      I could walk with help but still could not walk alone and was in a wheel chair.  It took about three months of constant work to be able to walk with canes.  Never did I regain my original ability.  They told me that I would regain everything, but I was 55 years old and I think they were thinking of those young people.

      I now have more residuals showing up that were gone at first.  As I get older the residuals come back and worsen. My legs hurt to the touch and are partially numb.  My feet are more involved in numbness and pain at times.  The sweating and exhaustion are getting worse along with frustration.  My balance was always involved but now it is getting worse.  I am 78 years old and I hope this will stop increasing.

      I now need a knee replacement and I am scared that I will have so much more pain than I had with my first knee replacement before I contracted GBS.