Bojan's Story - Part 1 - Contracting & Dealing with Miller Fisher Syndrome

Part 2 - Post MFS is below

My problems started on Monday December the 5th, 2011 although at the time I did not know it was MFS. I had noticed some problems with my eyes, such as redness, watering and sensitivity to light. In general nothing serious, just slightly unpleasant. On Wednesday night I went to bed and woke up in the morning to find I was unable to pick up the cup of coffee my wife prepared for me. I'd been grabbing at it. I'd also noticed some difficulties while walking; I had problems with balance which I supposed were connected with my double vision.

I went to my doctor. She diagnosed me with inflammation of the eyes and gave me prescriptions for eye drops and eye ointment, both antibiotics. She also told me if I was not better or had improved by next morning I should return. So I did everything she said. Next morning I woke up totally terrified because my condition was even worse. I went back and have been sent to eye specialist urgently. He gave me proper eye check to discover there was something more. He just told me my eye nerve was inflamed and sent me to the hospital. By that time I've been almost unable to walk, I couldn’t raise my eyelids and my eyes were not reacting to light at all.

At the hospital in the neurological department, two different doctors checked me and had suspected I had suffered a stroke but they were not sure because there were major differences in my clinical picture compared with a usual picture of stroke patients. So they gave me CT, EKG, EEG and x-rayed my lungs, did complete blood tests and checked my thyroid. I can only tell you that I was getting worse by the minute and it felt pretty serious. In the evening the grave yard shift arrived and I sure felt ready for it, grave yard that is. Another doctor took a look at my test results and sent me for an MRI. When I came back from it, she told me for sure I had not had a stroke. She gave me two injections and waited for half an hour. She also took some pictures of my face, especially my eye lids and was not happy with the result although I'd been able to open my eyes after those two injections. All the time I had slightly raised blood pressure which had never been the case in the past. Because she hadn’t been able to determine what has been wrong with me she sent me to bed.

On the morning of Saturday, December 10th another doctor came. He had just flown in from a meeting in USA so that gave me some hope. I knew my condition was unusual because the head of the neurological department paid me a visit and she also was not able to determine what was wrong with me (this being in second biggest town in Slovenia with a University Clinical Centre gave me some serious concerns).

So the last doctor checked me again and went through all the test results and checks they did. After a while he came and told me he was pretty sure he knew what kind of disease I had. He told me he needed to determine how I'd got it and he had to collect some fluid my brain is floating around and being protected by. He told me he was going to get it through my spine. He did, and I can tell you it had been a painful experience (he had to do it twice, in the first attempt the fluid did not come out). He was pleased with the test results; they just confirmed my MFS had not been caused by a bacteria or virus.

In the same afternoon I got IV with the medicine I needed, for next four days the medicine kept dripping into me, each day four bottles of it. The amount of fluid which I was receiving was so high that capillary blood vessels on my hands and feet started to leak. After third day of treatment my condition stopped getting worse. By that time I looked pretty bad, I knew that because everybody who visited me almost instantly broke into tears when the saw me (and these were grown men, mostly police officers, my co-workers used to seeing disturbing and graphic situations). After the IV treatment I started with some exercises lead by physiotherapist which intended to improve my balance although I was not able to walk, I forced myself every morning to walk to the toilet and to take the shower by myself, I just remember hitting everything on my way to the bathroom, literary crawling on the walls trying not to kill myself or somebody else, I’m not even going to try to explain what was happening in the shower, to put it short; near death experience every single time). Looking back I still can’t decide if that was the best choice I made?! But the fact is I could walk almost normally within the week after I started to work with the physiotherapist. So the day before Christmas they sent me home. When I got home I discovered that even talking to my family for half an hour totally drained me. I could go for short walks, but nothing more than 15 minutes.

On the January 11th I went to the health resort and after three weeks of different treatments such as: physiotherapy in gym and pool, galvanic baths, electromagnetic therapy and extensive hours of massages I can tell you I made some progress. My balance is back to normal. My eyesight or double vision is returning to normal so I can already read magazines and books. I can obviously write on the computer and although it's going slowly, it’s going in the right direction. So I’m optimistic. Every day brings some new improvements. It has been almost two months since I contracted MFS and I hope in another two months I can give you a joyful update about my condition.

Bojan Gregorič on February 1st, 2012

Part 2 - Post MFS

Time for some good news, after 6 months I can gladly report I’m back to normal. My eyesight with double vision improved in the second half of March and is by now a thing of the past. It started with little improvements and then suddenly ended up as normal vision. I started to notice that my double vision is regressing if I turned my head slightly to the right and tried to look to the left. Same thing happened if I leaned my head back. I went to get some help from a therapist who deals with bio energy (although I normally do not prefer that kind of treatment, it has been my last resort for help). The therapist has been kind enough to tell me he can’t cure, he just speeds up the healing process. And he did. After four therapy sessions my double vision improved dramatically (so much so I could start riding my motorcycle again).

After that some tests were performed in the hospital (EMG tests - conductivity of nerves), and there is still some difference between my left and my right side of the body, left is getting better end of it but both results are within the normal speed of an adult person and the doctors believe it will improve even more, so I’ll repeat those after 6 months. I’m a bit sensitive to heat but I wouldn’t describe it as a serious problem. In June I’ll go back to work so my life is back to normal.

My message is: Don’t lose hope and never give up! It can only get better!

Bojan Gregorič on May 4th, 2012