New to the group

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.

Hi Rickyboby! I had a milder form of GBS and some Miller Fisher Variant symptoms too. I found a physical therapist who specialized in vestibular injuries. He was able to fix my vision and balance issues. I would have never believed that he could fix it that quick. It only took about 6 weeks of therapy and practicing the exercises for it to get better. He said that you can get around a damaged nerve pathway with exercise. He was right. I can run on a treadmill now and I only need the weakest reading glasses for tiny print. You should check into it.

Hi there, I’ve new to this, & I’ve never taken part in any kind of Internet chat but it’s so great to see there are other people out there with gbs & the bonus ball of miller fisher like me. Having double vision was horrible! You can’t do anything aye, I found audio books fantastic. One eye was much worse than the other for me, it completely turned in & if I put my fingers on the eyelid it was flicking the whole time. After a few months it slowly straightened up & the vision came right. Although now I have to wear reading glasses. I am back at work part time but if I do to much, I get excruciating back pain at night. I haven’t seen anyone since being discharged, apparantly I slipped through the system, so I’m awaiting a appointment for a neurosurgeon to see me now. My gp has never met anyone with miller fisher only gbs, so I’ve felt very alone.

Went down April 2012 with GBS to date(2/2016) walk with walker, but not far. Have to wear leg braces due to dropped foot. A double whammy for me...