Reply To: Possible Treatments For Miller Fisher/GBS after Discharge Long-term

Hi! I’m so sorry that you are experiencing this and with lack of true support. I was treated the same when I was at my worse. My case was milder but didn’t feel so mild to me. I wasn’t paralyzed and it didn’t show up on my EMG. However, I was believed to have GBS and possibly the Miller Fisher variant. Face showed signs first feeling swollen inside then ascending numbness/ weakness that started in one foot on one side and traveled up. I was never in a wheel chair but probably could have been at one point. I couldn’t walk without assistance and my face was so affected:  leg, arm, & face numbness, twitching, weakness, pain; difficulty turning my eyes (one side hit worse); blurred vision; balance issue; fatigue.  I thought I was going to be paralyzed in the beginning – nobody cared and everyone thought I was making it up or overexaggerating. They didn’t understand why I couldn’t just walk and finally when the numbness reached back up to my head, I had trouble speaking. My mind was working but the nerves weren’t allowing my muscles to work. So traumatizing & painful. What helped me was good PT. I went a couple times a week. First to someone who helped me with my arm and leg strength. They had me start pool walking at my gym. I could only do less than a minute when I first started and had to have someone to help me out. I also did very light massage. Both of those were so helpful in my recovery. I saw a PT who specialized in balance disorders. Apparently, my eyes were not turning at the same time. The eye dr. couldn’t see this but I could feel it. This PT had special glasses to see this. The nerves were affecting the muscles that turned my eyes. He worked with me and gave me special exercises to overcome the deficit. This fixed the balance problem and the blurred & double vision. So, pool walking, light massage, regular PT in leg/arm and face really made the difference. Recovery can continue for years so stay positive and keep pushing forward.