My up and down journey
AnonymousJune 21, 2008 at 6:04 pm
Next week, it will be exactly 6 months since I woke up with double vision and stumble gait.
I’ve wanted to post something here for a while now, but I’ve mostly been terrified to read something here that would scare me.
I made the mistake of doing my own research during the 1st three weeks of my ordeal on the internet from my hospital room on my mobile, a time when none of the doctors around knew what was going on with me.
The disease that matched my symptoms on the Internet was Multiple Sclerosis and the prognosis scared me. Unfortunately, the fear still haunts me till today, even though I’ve had 3 MRI scans.
My neuro, who I met 3 weeks after initial symptoms described me as a “textbook” miller fisher case, with my Ataxia, Areflexia and Optho(double vision).
I spent 5 days in hospital receiving IvIg treatment and noticed some improvement within 3 days of treatment. The numb sensations in my fingertips, toes and gums disappeared.
My double vision took 3 months to improve to the point where I only see double when I look all the way up or to the extreme right.
I feel “down” every now and again. My eyes still feel a little weird and I get weird weak sensations in my arms and legs.
I feel bad about stressing on these minor symptoms, especially since Allah has given back to me so much that I was ungrateful for before, but I’m scared that I might be having a relapse or that it might be MS or something chronic.
Do others also have these ups and downs 6 months later? Do you still feel weak and tingly in your arms, hands and fingers?
I used to be a Mountain Bike rider, cycling 30-40 Km on weekends, but I don’t have the guts to even lift my bike off it’s rack any more.:(
29, MFS Dec 2007
AnonymousJune 22, 2008 at 1:45 pm
I can’t answer your questions because I don’t have GBS or MFS. I just wanted to let you know that I understand how scary this disease must be when it comes on so suddenly. Maybe I’m more fortunate because for me my symptoms developed over many years giving me time to get used to it. It does get frustrating at times because I don’t see any light at the end of the tunnel.
Take care and look for the light at the end of [U]your[/U] tunnel
AnonymousJune 24, 2008 at 7:32 pm
Hi Yusuf, I had GBS-Miller Fisher which started Dec 15, 2005. Double vision, loss of balance and a lot of other things. I was airlifted to Mass General where I spent 2 weeks then another 2 weeks in a rehab then home to try and get better. Take your bike out and do it. I am a very avid golfer 5 days a week and I thought I would never be able to open my eye again to play golf, when my eyes started to open very slowly I said to my husband lets get away to Fla and do-some golfing. My balance was not great and of course had double vision really bad. I wore an eye patch to golf and even though I didn’t play well I was out there and having fun. At this time now I still have some double vision when I watch TV or go to the movies. I get to see 2 movies for the price of one (smile). I was giving IVIG and it did work. When the nerves were regenerating they crossed and my right eye is funny, when I chew my eye moves and when I move my eye my mouth moves, I just laugh. Do all you can do and have a positive attitude and think ahead not behind. Any questions please let me know. Phyllis
AnonymousSeptember 6, 2012 at 3:57 pm
It’s nice that most people see improvement. My husband was initially diagnosed over 5 years ago. Not only has he seen no improvement, it’s worse today than ever. He’s permanently disabled. The last neurologist we consulted told him depression was the reason he wasn’t getting better. Yeah, I suppose over 5 years of little balance, extreme pain and muscle weakness, numbness, and all the other symptoms, would leave a person depressed.
Has anyone mentioned that over doing it physically can actually set you back? Be cautious in starting your cycling again. Try it but be cautious and stop at the first sign of fatigue. Brad, my husband, walked ok actually until about 5 months after diagnosis when he tried going back to work as an electrical lineman. That night he could barely walk at all and its been down hill since. I love hitting the trails myself but don’t over do it or you could cause a relapse.
AnonymousAugust 7, 2013 at 7:10 am
Thanks Phyllis and Norb, we sometimes only need a reminder that there’ll be light by the end from the tunnel, just hard sometimes whenever you’re experiencing a low.
I’m learning to ignore these weird sensations in my fingers and arms that appear in the future and go.
AnonymousAugust 13, 2013 at 7:32 pm
My up and down journey:
Get up in the morning, if possible.
Stand and do something, either something that has to be done, or something I like to do.
Sit down for a while.
Stand up and move around a bit.
Sit down for a while.
Stand up and do some errands.
Lie down for a while.
Stand up and do some cooking.
Sit down for a while and eat.
Stand up and do the dishes.
Sit down for a while and watch tv.
Stand up and get ready for bed.
Lie down in bed for a night, and part of the next day.
(Repeat as necessary).
AnonymousAugust 13, 2013 at 10:15 pm
Great poem, D.U. Isn’t that just how it is? Life is suddenly all about accomplishing the most basic things. I remember making the journey to the bathroom being such a huge deal. Laying there, plotting out my course, taking the first step without falling over myself. Exhausted when I got there, wondering if I’d have it in me for the return trip! One little excursion like this after another… such were my days back then. And now, albeit 13 years post-GBS onset, life’s a similar pattern, only a rather unexpected contentment has slowly trickled in over time … and, by the grace of God, I’m able not only to accept these handicapped moments, but I rather enjoy the simplified way of life it’s all brought with it. Again, you put the journey of day-to-day in words so true and down-to-Earth.
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