Mylotters with MS - please sign in!
March 14, 2007 8:00pm CST
Multiple Sclerosis is a scary disease. One day or week you'll have horrid symptoms, the next few months you'll act like nothing happened! Then one day - boom! - you are going blind, cant walk, or even hold your grandbaby. MS IS terminal and deaths are up 50% from last year alone. The symptoms can go on for years and I ought to know, what I thought was "clumziness" in my late 30s or hormonal changes, is now crippling MS in my 50s. But to all of those who have tackled this disease with therapies, gross medications with even grosser side effects, and voodoo - its time to be recognized! Answer this discussion with your stories of how you found out and what you endured. From March 17 to April 22th is considered "Walk for the MS Cure" months. Sign up at your local MS chapter or local venue and help raise money for this awesome enterprise. I'll be there in my wheelchair with teh rest of them!
3 people like this
• Palatka, Florida
7 Jun 07
I got diagnosed after having double vision for about a year. Of course this was over 5 years ago. I have never walked in a walk because the sun here in Florida is to hot for me but I do make donations all the time for it I am a female almost in my mid 30's.
• United States
3 Apr 07
I was wrapping Christmas presents about six years ago when I thought I pulled a muscle in my back. After a few weeks of chiropractic, my back felt better but I couldn't feel my right foot. My MD did a bunch of tests...I saw a back surgeon, neurologist and had MRis of the spine and brain. They told me it might be MS...then told me it wasn't because they didn't see any lesions. They told me it was just sciatica. So for 4 years I just had my doctors telling me to take muscle relaxers when it got bad, lose some weight and maybe take up tai chi or some other slow stretching exercise. Well, I couldn't exercise because I was tired all the time and I still couldn't feel my right foot. Then, about 2 years ago, I started having double vision in one eye. My eye doctor ran blood tests, then a CT scan and then finally an MRI and confirmed that yes, all those classic symptoms I'd been having were indeed MS. We confirmed it with a spinal tap with the neurologist, but mostly I was just angry that they had misdiagnosed me the first time the symptoms appeared. Thankfully the double vision went away and now that I am being treated for the right things, I feel better most of the time. Still can't feel my right foot about half the time, but I no longer feel like I'm too lazy to get healthy. Still hate my Avonex, but after 2 years the side effects aren't as bad anymore and no relapses...so I'll be thankful for that.
• United States
15 Mar 07
Hi Bee, My Name is Paulette, and have had MS for about 20 yrs. The way I found out was my right thumb went sleepy feeling. This wouldn't go away, and it kept traveling up my arm. By the time I went to my nuero, he didn't feel it was carpal tunnel. As these symptoms continued, and a month went by I had an MRI of my spine. There the lesions were found, nuero sent me to the hospital for 6 days of IV solumedral therapy, and a spinal tap. MY symptoms had traveled to the point of not walking very well. I have tried all types of meds in this journey. I am on Betaseron, and I take neurontin to fight the muscle spasms, and icy/hot feeling in my feet. I have the numb tinglies I call it all over my body. I deal with bladder take detrol xl, and bowel problems. I have cognitive issues. The balance sways but, still able to walk, and drive. I have had episodes of ON, and it has effected my eyesight in my left eye. I try to stay positive, and with the help of a great support group they keep me uplifted. I have donated for the MS walks, and cheer those who are walking for us.
15 Mar 07
I'll be at my MS walk in my scooter this year with hubby and baby. I volunteer to be a cheerleader bascially while hubby does the walk with baby and team. I am 32 have RRMS have done intramuscular injections and been a guinea pig and tried alternatives now I do a subcutaneous treatment 3x a week and I do chemo as well as take about 4 other medications to help with symptoms... So I don't have whats considered the worst kind of MS but I have been very much affected by MS all of us are different and follow different paths with our symptoms... I really hope that the cure or treatment as good as comes very soon so we can all do better!!!!
• United States
15 Mar 07
I'm so sorry to hear that you've gotten so sick with your MS. It sounds as if you have an aggressive and relapsing case. My sister-in-law was diagnosed about 10 years ago, in her late 20's. She was misdiagnosed for months as you were; I know that this is often the case, unfortunately. The symptoms can be elusive, but enough is known about MS now that I don't think there is any excuse for this. They ended up telling her that it was her birth control pills and that she needed to stop them (she had begun them about 6 months before she noticed the symptoms, so this was all they could think of). When she was finally diagnosed, she was put on Copaxone injections immediately and has been taking this medication ever since. She has only had 2 very small relapses, thank God. She feels well most days, other than fatigue which occurs daily. She needs to take a muscle relaxer very occasionally for spasticity. We walk in the MS walk every year, but ours isn't until May in this part of the country. I'm glad to hear that you are out there and are staying active, no matter what this disease does to you. I admire your courage and commitment.