Multiple Sclerosis (MS) Support Group
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My daughter always asks for a brother or sister and for me to play with her, but its my fault I can't be the mom she deserves...
My daughter was born in April 2009 in Germany. I had a great pregnancy and had full mobility. I was diagnosed in 2005 with MS, but wasn't on meds. About a year after my daughter was born I had my first T-spine relapse, then a second, and a third. I was pretty much a 6 on the disability scale in 2011. I had to learn how to use Betaseron via youtube because I was an American living overseas and US nurses couldn't help. (long story). It didn't work. We finally moved to Alabama, and I was given steroids and put on Tysabri.
Fast forward. I've been on Tysabri for 5ish years mixed with Ampyra, Baclofen, and Vesicare. My life is full of challenges, but I see people who are worse off then me. I am truly thankful I have what I have, but can't walk a half a mile. People see me walk straight lines and assume Im fine, but thats another story...
My original MS neuro in Germany said to go on Tysabri back in 2009 after my daughter was born, but I heard how horrible a drug it was; killing people, leading to infertility, etc (in Germany, no one to talk to). I refused. I was so determined to nurse my child as long as I could to prevent her from getting MS (my mother has it also). The last night I nursed her was around the 21st of december 2010. I walked my dog in the fresh snowfall in our village at 8:30 pm. The next night I struggled to go around the neighborhood. The third night, I barely made it out of my driveway. I was having a long drawn out relapse. 6
Had I listened to the german neuro and went on tysabri back in 2009, I might be able to have another child, play soccer and kick the ball with her, walk the dogs, push my girl on the swings, go to amusement park without being pushed in a wheelchair, sit in the sun without loosing energy, hiking the mountains across the street from our house with my family and not just watch them leave from my window, take her skiing, be happy, walk a mall to buy clothes, not yell at her when I'm about to pee my pants even though I just went to the bathroom, clean the house in one day, smile more often, have a social life, sit down with my daughter without falling asleep (she played dolls on my tummy while i napped on the floor of her play area. She was thankful I was present and not cleaning the house to stay awake),etc, etc, etc.
I should have listened to the german doctor (whatever he said, the translator did ok) and went on Tysabri right after my girl was born. I thought she needed me more than I needed the meds. As it turned out, I needed the meds so I could take of her. I failed to make the right decision. I live in regret everyday.
I just needed to write it down.
My daughter was born in April 2009 in Germany. I had a great pregnancy and had full mobility. I was diagnosed in 2005 with MS, but wasn't on meds. About a year after my daughter was born I had my first T-spine relapse, then a second, and a third. I was pretty much a 6 on the disability scale in 2011. I had to learn how to use Betaseron via youtube because I was an American living overseas and US nurses couldn't help. (long story). It didn't work. We finally moved to Alabama, and I was given steroids and put on Tysabri.
Fast forward. I've been on Tysabri for 5ish years mixed with Ampyra, Baclofen, and Vesicare. My life is full of challenges, but I see people who are worse off then me. I am truly thankful I have what I have, but can't walk a half a mile. People see me walk straight lines and assume Im fine, but thats another story...
My original MS neuro in Germany said to go on Tysabri back in 2009 after my daughter was born, but I heard how horrible a drug it was; killing people, leading to infertility, etc (in Germany, no one to talk to). I refused. I was so determined to nurse my child as long as I could to prevent her from getting MS (my mother has it also). The last night I nursed her was around the 21st of december 2010. I walked my dog in the fresh snowfall in our village at 8:30 pm. The next night I struggled to go around the neighborhood. The third night, I barely made it out of my driveway. I was having a long drawn out relapse. 6
Had I listened to the german neuro and went on tysabri back in 2009, I might be able to have another child, play soccer and kick the ball with her, walk the dogs, push my girl on the swings, go to amusement park without being pushed in a wheelchair, sit in the sun without loosing energy, hiking the mountains across the street from our house with my family and not just watch them leave from my window, take her skiing, be happy, walk a mall to buy clothes, not yell at her when I'm about to pee my pants even though I just went to the bathroom, clean the house in one day, smile more often, have a social life, sit down with my daughter without falling asleep (she played dolls on my tummy while i napped on the floor of her play area. She was thankful I was present and not cleaning the house to stay awake),etc, etc, etc.
I should have listened to the german doctor (whatever he said, the translator did ok) and went on Tysabri right after my girl was born. I thought she needed me more than I needed the meds. As it turned out, I needed the meds so I could take of her. I failed to make the right decision. I live in regret everyday.
I just needed to write it down.
I'm sorry no medicine is available for you now. Do you take supplements or anything that has helped you? There's so much out there on alternative medicine, but some of it is purely crap. Just curious if something has helped you.
I was diagnosed in 2009 (a year after my second son was born) with PPMS, so disease modifying drugs are out. Just symptomatic treatment (Baclophen, tisadine, an equivalent to vesicare, tons of vitamin supplements, ginseng. . .)
For the past several months my mobility scooter has taken over for my legs. I hate it, because if it doesn't work, I'm stuck (3 or 4 major mechanical problems so far this year!)
Joined a gym again several months ago, trying to recover, or at least maintain, what little muscle I have left. . .
We can only fight to be the best we can under the circumstances!