I am very pleased to have found this online forum. So many stories that I can relate to and others that have suffered way more than myself. In my most trying days I often said " I would not wish this on the Taliban" Not really true but people got the idea.
This past Dec. 1st, I had pneumonia, I received the normal injection and antibiotics. Within 36 hours my legs from the knees down were excruciatingly painful. That turned to the numbness in both hands and feet. A few days later the torso.
We are "snow birds" in a motorhome in FL. I only had medical care thru the VA. I fortunately just got on Medicare. The VA was impossible to deal with as I was "out of my home area region". I went to a local ER after 2 days and waited the usual 7 hrs to be seen. Chest xray and blood screen and sent home. I returned 2 days later for an 8 hr wait, brain MRI and told to see a neurologist if it worsened. They had NO clue. I had to choose a primary care Dr. from the phone book to get a referral to a Neurologist. After two days I saw the guy and he ordered blood work spinal tap and MRI of the spine. These were scheduled for 8 days later.
Still having no idea what was wrong, after 9 days of confusion and pain, I dialed 911.
I was sent to Orlando Regional Medical Center and had all test run and within 12 hours I was on the IVIG with speculation it was GBS. Later confirmed along with Miller Fisher Variant. I spent 13 days in their wonderful facility to be discharged on Christmas Eve.
I am certainly one of the fortunate ones to now be able to walk maybe 5 min. without aid but do use a walker. (one month after IVIG) The double vision is still an issue hard to deal with and seems to get no better.
Today I went to a great Neurologist that has prescribed Prenizone, Vitamin B complex and upped my
Gabapentin to 900mg /day. He thought I was doing very well for in the short amount of time. He commented that a heart surgeon he knew had GBS for 2 months and was back at work doing fine. That was very encouraging to hear.
This forum has enlightened me to so much information. I know the process is slow with setbacks and relapses.( UGH ) I only hope that the medical field will soon have answers to relieve and prevent this illness. My thanks to all contributors here and God's speed.