My brother was diagnosed with Miller Fisher Syndrome and GBS on Feb 13, 2015. He is being weaned from ventilator but it feels like we go 10 steps forward and 5 steps back. Does anyone have a relative or friend that has both MFS and GBS? I am also concerned about his eyes; they are always red; each have had a stye and they are not aligned; and the acute hospital where he was admitted after GBS treatment at the Regional Trauma Neuro-ICU does not have a neuro-optometrist on staff. Should we bring in an Optometrist from the area? Should his wife be putting on his glasses when his eyes are not functioning? Will his strong prescription glasses hurt his eyes since they are not back to "normal" yet. I believe he is probably seeing double vision but he can not speak to us yet. He is paralyzed and only moves his feet and grasps his hands once in a while. This is a serious case involving motor and sensory issues. Our family could really use the support of anyone that has dealt with this double whammie!
I got both GBS and MFS. i did not have as a severe case as this. I could not close my eyes all the way for at least a month after i got out of the hospital. I had to ware a sleeping mask to keep the light out so i could sleep. I did not have a problem with double vision i think because i have a lense implant in my left eye. Others have posted that a patch over 1 eye helped. If he cannot respond then i probably would not put a mask over his eyes It would be scary not being able to see anything. A lot of light still bothers me alot and the only fix is a nap of 2.
As i said i had a mild case, 5 days in the hospital, the left side of my face was completely paralyzed, weak and numb eveywhere else. its been almost 7 months since this happened to me. As of last week my face does not droop. I still have problems with my tung and talking, hands are still numb but they work.
from what i have read and experienced Everyone recovery is different and it could be a very long road, stay strong and supportive
So sorry that he is having such a tough time! I had trouble with numbness in my face (especially the left side), difficulty chewing and speaking at one point, some double vision at my worst, and difficulty turning my right eye. It all started for me after a Tetanus shot in June 2014. I also had ascending weakness/numbness from my right foot through my entire body. I had almost recovered until I had a sinus infection about a month ago when I had a re-flare of symptoms though much milder than previously.
Everything works but not as well. I still feel so many twitches which seem to get worse with too much activity or heat. But I am thankful that things work now. Hope that he is making progress. The road feels so long at times but I'm happy to have met others along the way who have shared their experiences and provided light to me along the way.
My brother in law was admitted to hospital after having complaints about double vision and not able to walk. His condition started deteriorating very fast while the doctor was trying to diagnose the prob. After ruling out other conditions by testing serum from his spine, the doc started ivig treatment and shifted him to ICU. The rate of deterioration of his condition was so fast that he went into ventilator on the very third day. He did not respond to ivig treatment for 7 days. On the 8th day he slightly flickered his toes. He was in ICU for 18 days and is in ward for almost 15 days but he is still on ventilator and on life support system. He hasn’t opened his eyes till now. Doc has started his physiotherapy but even after so many days his improvement is almost nil. The doc is saying he hasn’t seen such a severe case before. He is still getting his feed and medicines via central line. Can any body share any experience/ case which was similar to this but patient recovered fully?
My brother was admitted Feb 13 diagnosed with botulism. Finally, doctors diagnosed Miller-Fisher Syndrome, a "variant" of Guillian Barre Syndrome. After 3 months of his wife trying to "end his life" by pulling the plug on the ventilator, our family through some expensive lawyers were spared his life. He is still paralyzed but making progress although slowly. He can squeeze balls with both hands to the count of 100, he pushes his feet against the "boot straps" that prevent foot from "dropping". He now smiles, moves his tongue side to side, but can not speak. He is still on the ventilator most of the time. He does not show signs of brain damage and actually his "personality" shows through in the way he "rolls his eyes"; smiles at old family jokes, etc. Be strong this is a lengthy recovery but we understand that most hospitals do no know the process on how to even wean GBS from the ventilators which is different from "other" diseases or syndromes. My brother is expected to make a 90% recovery but we are talking 1-2 years of therapy, etc. However long it takes, we are behind our brother and he will pull through and walk, talk, and laugh again!