MFS, 1 year today
AnonymousJune 4, 2008 at 4:02 pm
I’m new to this site but thought I share my experience with MFS.
Wow, what a ride it’s been from June 5, 2007
Started off with a bang! I woke up one morning with double vision so bad I knew going to work that morning wasn’t an option. I felt fine otherwise and proceeded to get into the nearest eye clinic. It was Dx sixth cranial nerve palsy. Not to worry it would go away in 8-12 weeks and after CTs MIR’s and a hoard of blood work everything came back looking ok. The Dx seemed good to me too as the doctor also mentioned I might experience some tingeing in the fingers along with vertigo.
By the end of the first week I had all of that plus a little more.
With check ups every two weeks the double vision got worse and peeked at about the 6th week. When the 8th week arrived sure enough the vision was improving and by week 11 it was gone…..but.
I could not walk without holding onto my wife’s arm and I attributed my weakness on the fact I was sitting in a chair or laying on the couch for the past 3 months. finally the ophthalmologist said “you better seen a neurologist”
October 15 I get to see him and he did a spinal tap that day.
The next day I had a Dx of MFS and received 1500 units of IVIG.
My walking improved tremendously by the end of that week
Six weeks after the IVIG the improvements stopped. The neuropathy in my hands and feet kept me awake at night and I still had no strength in my arms and the right one wouldn’t even move. Of course I WAS right handed.
They tried another dose of IGIV. 1500 units over two days this time.
No help whatsoever.
I started PT for the arms at the same time I received the first dose of IVIG and after 12 weeks and no improvement, the therapist said “that’s all we can do”
I was really depressed so say the least. The cold temperatures of the Pennsylvania winter would turn my fingers and toes white along with excruciating pain and that was with thermal everything on.
Everything I had ever hoped for in my retirement years had just crumbled and come to a screeching halt. I was mean to my wife and snippy with everyone. I just felt like I was dumped off at the side of the road and left for dead. On disability now and any hope of returning to work and a normal life seemed impossible.
Enter my savior: Thank you Sweet Jesus!
My daughter called one cold January day and ask if I would be willing to come down to Central Texas to get the grand daughter off to school as she had taken a job in Austin. It would only be until the end of the school year.
I took the job in Texas and my loving wife was all for it. She knew the cold really bothered me. We’ve been married 37 years and this was a major decision for both of us to be apart for so long. We depend on each other so much.
As it was, the new job didn’t work out for my daughter and two weeks later she’s back home and said, “You know Dad, you should see a neurologist while you’re here. Mind you I waited 6 %^$#* weeks to see one in PA.
We walked in off the street. I walked up to the receptionist and announced that I’d like to see a neurologist. She asked if next Tuesday would be ok?
I’m almost in shock. Heck yes!
At that first office visit, the neurologist said to me “How long has that right shoulder been frozen?” “You need to see an orthopedic surgeon.” The very next week he “manipulated” it along with a shot of cortisone. Bingo I’ve got use of my right arm again!
Yes it’s weak both of them for that matter but I can raise them both above my head. Put a shirt on. Pull my pants up and tuck my shirt tail in after 3 months of physical therapy.
I still have some balance issues when going up and down steps, the tingling still persists in my toes and the arms are weak along with some shaking when I try to do fine motor skills but I feel like i have been given a new lease on life getting the right arm back.
I’m praying I can return to work by September.
Thank you sweet Jesus.
Sorry my first post was so long, Im so joyful I can type again.
Keep the faith.
AnonymousJune 4, 2008 at 6:10 pm
😀 I am glad you found us. But I am sorry it took you so long to get the treatment you needed. A faster treatment would have helped you, a lot. I am sure you have read thru the other threads thruout this group of forums. GBS stands for “getting better slowly”. Come back often. Ask questions. Let off stean. Brag on the graqndkids. We are all family here.:D
AnonymousJune 4, 2008 at 10:30 pm
Thank you so much for listening. Hope, faith, support from friends & loved ones and the patients of Job brought me through it all.
There was a ton of bitterness in me for the physicians involved early on.
I’ve learned to let it go.
I am so grateful now for the little things that I took for granted before.
Oftentimes there was a tiny improvement along the way and it took a friend to point it out to me “hey you couldn’t flip that light switch the last time I saw you” Those words added hope and encouragement every time I heard them.
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