I am still confused today!

November 2, 2006 at 11:26 am

I was told that Miller Fisher starts in the head and travels downward and GBS starts in the hands and feet and travels upward. I was trying to tell the doctors that my problems started years before with not double vision but that ghost shadow. Making phone and electrical wires look like a hanging network of double wires hanging one under the other. As I studied this problem I noticed the real wire was the darker image and I adapted. I noticed it got worse if I was on the computer and then would drive. Or if I would read and then drive. I just planned my day accordingly. Nothing was done about it at my regular eye exams. I did get reading glasses and just conntributed everything to old age. I can remember it back when I was 50 years old. Active lifestyle and traveling around from state to state on the weekends. Trying to quickly tell the Doctors this and them lip reading they come up with the Miller Fisher Variant. I am not sure that I agree with that but I also do not know the results of all the other tests. I never had the headaches that others have spoke about and I never had facial pain either.

Here is where the time frame and memory give me the only guideline I can go by and I am not even sure if it is part of what happened. A few months before the onset of GBS/MFv I went to the eye Doctor for a routine visit and he noticed the opening to my Optic Nerve was swollen and told me to go to my family Doctor and he would send him a letter explaining what he seen. I was also noticing water weight and retension in my hands and my feet were swelling. The Doctor put me on a water pill and both of us did not even mention the letter that was never mailed from the eye Doctor. I was starting to feel much better and the Holidays were approaching and I was trying to get ready for my fall cleaning and felt tired. I could always come up with a reason for my fingers and toes falling asleep. I had my arm out the window of the car. I had my leg in a funny position. Maybe a week later it would come back or a few days later I would feel the tingling. I just ignored it. About a week before my onset I noticed the tissue around my eye ball was swollen and I had a heavy discharge in my eye the one morning. I was busy and I had it in the back of my mind if it continued I would go see the Doctor. The tissue seemed to stay the same and the discharge stopped. I was watching for Pink Eye. The dryness in my eye went away and I forgot about it for the weekend.

Saturday was a busy schedule. Lunch with my Husbands Aunt and her family at a new resturant. I raked the yard after lunch and got tired and went in the house. Usually I would have finished the whole yard but figured it was because I was also doing Spring Cleaning in the Fall before the Holidays. I had almost all my Fall decorations up and was looking forward to the Holidays. Later that night I even went out and did grocery shopping. I had really had a busy day!

Sunday I woke up with numb feet and hands and I clearly had double vision of two completely separate images. I also thought I had a stroke. Off to the ER where they said it was MS but would keep me for observation and tests.

As my team of Doctors grew and my health started to decline they had also come up with I had GBS and our chat about what had happened with my eyes before this they said it was MF variant. Treatment would be the same so I calmed down and did not try to explain that the ghost vision was 5 years ago. Then we started to talk about any infections or illnesses I had. That only added to the mystery of this illness. I had been fairly healthy. Having a history of Sinus infections they figured that was the reason and it was too mild for me to call the Doctor. They also said it had to be an infections in the last 30 days. I had none that I could remember.

Then I declined quickly with each day and was not able to walk from the bathroom to the bed. Then I felt weak while feeding myself. Swallowing was difficult and finally I was drinking and was not able to swallow the Ginger Ale in my cup. Step by Step I had to alert the Nurses to each problem as they occured. I was in ICU and then hit bottom. The IVIG was not working to stop the progression and I was transferred to a different hospital that could treat me with the Plasmaphresis Exchanges. Ventilators and complications with that, Colasped Lung and Trache and the first of them failed. I was on life support before I knew it with my eyes stuck wide open day and night for months. As quick as it started and 3 weeks in the ICU it started to reverse and each day I had “Brags” to share with the Aids, Nurses and Family members. I was now coming out of being totally paralized (except for my feet from the ankles down) Lucky for me I had set up “signals” with my feet.

Rehab followed and I worked hard to get out of the hospital after 9 weeks I was home. Funny but like others a week later the double vision cleared enough so I could watch TV. Not being able to watch TV or read made those 9 weeks go very slow. While in the hospital I had asked for a Neuro Opthomolagist and continue to see him regular even now. He kept me calm and told me that my vision would get better. I had hemoraging in my eyes that slowed me down from driving and going to rehab. I had Occupational Therapy and Physical Therapy at home and had a Nurse visit me. Once they released me I did go to a facility and started to keep a regular routine of Doctor visits going. Up to this point I did not experience any headaches or constant nerve pain. Once in a while I do get a electrical shock type pain or those tiny jabbing stabs. Nothing that I have had to take medication for.

My heart goes out to those of us that have suffered from those kinds of things. I had hard enough time without suffering from that too.

Now with only a few days from being a year since my onset. I have GREAT news! I am doing well and still get tired. I am patient and have learned to pace myself. I still get tired and listen to my body. I have a personal trainer and use the pool and machines at the health club and keep up a daily routine exercising at home also. I am getting my strenght back and I am able to do most of my daily routine. Just takes me longer to do most tasks, but I am doing them! Water aerobics and other classes in the water did help alot with balance, strengh and stamina. I know I am [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly. I still see improvements about every two weeks. Those little things in life that make it a little easier each day!

Did I have Miller Fisher Variant? I am still not sure when I see what everyone else went thru. I just tell people I had GBS! My records show I had MFv Either way I am glad to be part of this Great family and I appreciate what our care givers have gone through. All of you have helped me learn so much and what to expect! Thank you everyone!