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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Hi Star- here are my answers:

1. What were your first three symptoms? Did they came all together or one by one?
I first noticed balance issues- tripping over my own feet, having people joke and say "first day with the new shoes?" and as a dancer, realizing that my performance was off...my second big change was heat sensitivity. I wasnt able to get out of a hot shower and blow dry my hair without breaking down in tears...and sweating myself into dizziness. This dizziness also affected my cognitive thinking. I actually made myself stupid by overheating! My big issue, which took me to a doctor is i woke up one day with complete numbness in my left hand and fingers...it lingered for more then 3 days and it was a painful , tingling pain- shooting up into my arm. I was terrified Id had a stroke and went to my doctor on day 3.

2. How was your DX confirmed?
Because I was convinced Id had a stroke, I went to the doctor, who sent me to the ER and ruled a stroke out. HE figured it was carpal tunnel, so I was given an EMG, which was normal. Then, they figured it was a pinched nerve and I was sent for a CT scan. IT was the radiologist who noticed abnormalities and called in a Neurologist to take a look. The Neuro had me in a MRI within an hour and in his office the following day for a discussion. I was told it was 99% sure it was MS due to having over 50 lesions on my brain. The Neuro also ordered a Spinal Tap, which was normal and then sent me to a MS specialist to confirm what he thought (along with all my test results) and the MS specialist confirmed MS . The whole thing took less then a week!

3. How does your symptoms/condition have evolved since, and how does this evolution has progressed, in days, weeks, months?

I started Copaxone immediately and within a week almost died from it. I stopped breathing several times and wound up in the ambulance being revived twice. They took me off Copaxone and started me on Rebif 2 weeks later. Since then, Ive been on Rebif almost 5 years now. I havent really progressed at all. Ive had a few bouts with Optic Neruritis in the first year. I was on IV steroids for that. Ive had really bad days, where the legs hurt and the whole body is tingling and in pain. Ive had days where the mornings are actually scary- wondering how my balance will be when first putting my feet on the floor..my first few minutes I sometimes feel like my head isnt attached to my body, but as the morning goes on, better. Im the girl who does too much! I overdo it at work, which is incredibly cerebral and emotional. I ride my horse on weekends, I travel constantly. I go to school (Doctorate level), I have 3 kids. Id say Im extremely lucky that Rebif is working as well as it is. From a radiographical standpoint, I have not had any additional lesions...

4. What's your main issue(Physically) with your condition right now, and does it has a specific trigger?
Still have the heat sensitivity. I have to avoid overheating at all costs! My yearly vacation in the carribean is always in March, when its 80 and not 95 degrees. And as long as I stay in the pool, or keep my feet wet, I can deal with it...No more hot showers, no hot tubs or baths EVER.
I cant wear too many clothes, even in the winter, my body overheats, it then goes numb! I lose the ability to be balanced and my gait goes off when I overheat. A huge trigger for me is stress. If I allow myself to get stresed out at work, or even with my family, I can feel the pain in my hands/ fingers worsen. Its been almost 5 years now and I have permanent nerve damage, caused by a lesion in my brain in my hands. I have to use voice recognition software 95% of the time, because typing is impossible. tough, especially when writing 500 page college papers! My balance isnt improved. Gone are the days of high heels with my business suits...I have to wear flat shoes. And mostly the exhuastion......the MS fatigue does me in. I go to bed by 9 pm and am up at 6 am, and even then, I often find myself having to pull over during the day and rest my eyes....my job is a ton of driving and traveling.

I think MS is one of the MOST manageable diseases a person can have. I also know first hand that if I had to develope an illness, Id rather have MS then 99% of the other diseases out there. Since I deal with terminal illness every day of my life , Ive learned to be grateful that MS is my issue....It hasnt changed me. In fact, its made me more aware of my body and my health. I eat right, I exercise 6 days a week- I take the right supplements (fish oils and Vit D) I learned to stay away from junk supplements like anti-oxidents and ecchinacea. I live a very full life and concentrate on GOOD days and not bad ones. Its a horrible sad thing to say, but now adays, if a person is told they have MS, its the BEST time to hear it. TEN years ago, we didnt have all the drugs which slow down progression. Back when people were first dx, it was literally "too late' for them to start these drugs by the time they were on the market. But, now, if you start a drug quickly and stick to it- there is much hope that it will work and you will live a normal life. Im living proof that they do work for relapsing/remitting MS. Maybe Im a statistic, but Im one of the good ones!

Hope this helps.
Nikki





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