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

    • January 17, 2024 at 6:18 pm

      I am seeking any helpful information or tips as to any treatments or types of therapies that helped anyone, since I feel very alone and confused about many things regarding my condition. But sadly, the lack of medical support I have received as well might have kept me in the dark about advocating better for myself. I was diagnosed with GBS in April 2022, but in August 2022 was when doctors narrowed down the GBS diagnosis to include the variant Miller Fisher. My condition left me almost paralyzed- I have severe muscle weakness on both legs, weakness on my right arm (left arm is much better but still fatigues), and residual right facial paralysis. I received 5 days of IVIG and 5 days of plasma treatment during an almost month-long hospital stay. When I received the plasma treatment, I was able to move around alot more- I was able to use both my legs, wiggle my toes, lift my arms up. But two weeks after getting discharged and at home, the weakness came back and I became the state I was before the plasma/ivig treatment again (basically wheelchair bound, unable to move both legs, unable to wiggle my toes, unable to use right arm). I have been getting physical therapy once a week, and I started occupational therapy a couple of months ago (August 2023). However, I don’t know if I should seek more ivig/plasma treatment or more aggressive pt/ot therapy? I have tried talking to my neurologist and physical medicine doctor at Kaiser, but because I am young (25yrs, female), I am dismissed a lot of the times. If anyone has anything that might be helpful I would appreciate it! As I am nearing my 2 year mark, I want to go full force to give myself a better possible recovery. I do have sensation everywhere, there was no nerve damage from studies I got done, and CSF did show oggliconal bands which is what led to the GBS diagnosis. I am able to walk a little (30ft) with a walker, and do small things here and there around my house, but still require assistance with most things. Any info/advice is helpful and appreciated! THANK YOU!

    • January 18, 2024 at 11:11 am

      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.

      • February 5, 2024 at 6:05 pm

        Hi friend!

        Thank you for sharing your journey- how tough it is out there to be HEARD and UNDERSTOOD. I truly am there with you and I am shocked at how medical providers can be so dismissive at times when we need that extra support the most. I definitely had similar starts to my diagnosis, it started with my face and then went down to me foot/leg and ascended. It is scary! I have been able to increase my walking distance, but it is more of a day by day thing.  I will have to look into doing some pool PT that is something that I haven’t thought about yet. But thank you so much for the tips! I will have to look into all of that and increasing my PT days too.

        Hope your days are easier on you and that your recovery continues to go just as good.