Sos remember i started out on copaxone. this did not work for me back in 04. Rebif did work, but then caused depression in 09. so i stopped rebif. Right now i am faced with this decision:
stay on rebif, with major depresion, or
go on cpaxone, with the risk of it not working again, or
go on the new IV drug, which carries a 1-1000 risk of a brain infection (incurable) Or
do no meds. Thats is what i am doing now, and of course experiencing an attack of optic neuritis becaue of it.
SOOOO i will be starting copaxone soon. This was my plan all along, but it has taken so long to get it started, that while in limbo, not on neds, i had aquickie attack.
I liked copaxone becaue it had no side aeffects, (flu, depression, like rebif) and did not hurt so much to inject (the shots of ocourse hurt, bu the medicine doesnt. Rebif really hurts going in, burns.)
SBut of course the copaxone didnt help my mS while the rebif really did. I kind of have litlte choice, but my neuro says that the copaxone might just work now, so we'll see.
Monday, November 2, 2009
forgot about the other mahjor steoid dose
back in 2004, i was taking 10000 mg of steroid a day (in the form of 20 pills) one day a month for 6 months. This was to shock my system into remission.
It did not work. Sos i then went to Boston, got my 2nd opinion, and so on and so on.
It did not work. Sos i then went to Boston, got my 2nd opinion, and so on and so on.
Rebif FAIL
So after my 3rd child (born june 2009) was born, i went back on rebif. This cause MAJOR depression for me this time around, so i had to stop it after 2-3 months. I was breaking down from the depression and anxiety, and starting to contemplate suicide.
i considered going to half dose, but the depression was still too strong, so i stopped it altogether, after discussing with my neurologist.
ABout 5 days later, i lost quite a lot of vision in my left eye. Well, dear reader, you may remember that i lost 'quite a bit' of vision in my right eye earlier. So now i am about even, which is pretty miserable for seeing n stuff.
So i went on oral steroids, 400 mg spread out over a week or so (this is abotu 20 times the normal dose.) STeroids make me very cranky and combative, and not at all muscular. BUT they are helping a bit with the healing, i can read text a bit now, but it is still very hard to read text whether on papaer or a backlit screen. But i can manage, and do most anything i need to do, just through a haze of static.
i considered going to half dose, but the depression was still too strong, so i stopped it altogether, after discussing with my neurologist.
ABout 5 days later, i lost quite a lot of vision in my left eye. Well, dear reader, you may remember that i lost 'quite a bit' of vision in my right eye earlier. So now i am about even, which is pretty miserable for seeing n stuff.
So i went on oral steroids, 400 mg spread out over a week or so (this is abotu 20 times the normal dose.) STeroids make me very cranky and combative, and not at all muscular. BUT they are helping a bit with the healing, i can read text a bit now, but it is still very hard to read text whether on papaer or a backlit screen. But i can manage, and do most anything i need to do, just through a haze of static.
spaghetti legs
about 6-8 months after the birth of my second child (born nov 2006), lesions on my medulla caused my legs to collapse, so i need a cane. not ALL the time , but on hot days certainly. Also, it cause palsy in my eye , so i have severe double vision. I have a strong prism in my glasses to help with that.
Chemo/2nd opinion
in Feb 2005, i heard from the neuro that my MRI looked bad, the Copaxone was not working, and he wanted me on chemo for a year. i wanted to have another baby , so we got a second opinion, with his blessing. he ssent us to Haarvard Medical school MS center in boston. they took a look at my ccase, said 'take rebif for a few months, repeat mRi, and we'll see:" so i did so, and rebif worked. So i went off rebif and conceevied my second child by the following february,.
Blindness Sept 2004
i lost vision in my right eye in sept 2004. all vision in right eye gone, like a white explosion of light. Took IV steroids, iteventually got better, so that i have like 85% of my vision in my right eye. it is still very hazy tho.
Saturday, July 12, 2008
First Major Attack
Three months went by, my first anniversary approached. One day i noticed my feet were asleep and no amount of wiggling would wake them up. The next day, my legs were numb/tingly from the knees down. The next day, from the waist down. It was like i was being slowing dipped into prickley water, LOL.
I of course started to get scared, but still just thought i had a pinched nerve, altho i knew from research that numbness on both sides of the body was NOT good. I went to my MD, and had MRIs done.
By the end of the week, i was "asleep" from the chest down, and then it started to spread down my arms to my hands. Until this point, it was just tingly 'fallen asleep' prickles, but then it got very painful. I was terrified, i could not use my hands, my arms were like wet spaghetti, i could not use them effectively to do anything, and the pain was like when you chew on aluminum foil (if you have fillings), only in my arms, if that makes sense. Touching my sweet baby's soft skin was like dragging my hands across sharp, jagged glass. It was excruciating. This was all on my first mother's day, by the way. No one from either side of the family called or even gave me a stupid card either, LOL , altho i think my husband said happy mother's day, cautiously, haha, as he knew i was in a lot of pain.
So the next day, the Monday after Mother's day, i desperately called my MD AGAIN for test results. She called me back and said,
"Jennifer, it's not good. It's MS"
YIKES! Not the greatest way to deliver the news, but what else could she say? But i just fell apart. My newborn daughter was lying on the sofa looking at me, sobbing, i can still see her concerned face, staring at me, scared. the first thing i asked my MD was, "Will i have to wean?" and she said i probably would, as the drugs would be major. I had a hundred questions, none of which she could answer, so i headed back to my neurologist.
I was terrified, i called my husband, and he rushed home from work. I was just devastated, i remembered hearing Montel Williams had MS, and at that time I thought, "oh , how horrible, i bet that will happen to me" and sure enough it did. I didn't even know much about it, except that they say you can be blind one week, in a wheelchair the next. That's about right too, LOL. Well, to a point.
I went to that original neuro, the one that zapped me, and we talked, about medication, breast feeding, all that. I think he was OK with me breastfeeding on medication. (I had researched it right away and saw promising data on continuing).
My mother and aunt work in the medical field , and they jumped in to find the best neuorologist in the area, who fortunately turned out to be a leading MS doctor. He is also the sweetest man I hav eever had the pleasure of meeting. I chose him as my neurologist and continued seeing him. He looked at the data i collected concerning breastfeeding and agreed that as long as i was OK with it, he was too. So, i planned on starting Multiple Sclerosis meds soon. I chose Copaxone
First I was scheduled to have 3 days of at-home nurse administered IV steroids, to help me heal, as i was in such bad shape. I had the ttypical 1000 mg of solumedrol i believe, administered via IV, over the course of an hour, once a day for 3 days. The nurse starts the IV, helps with the first administration and then taps it off. I plug into the IV drip myself the next 2 days. I could not nurse my child until 4 hours after the drip finished, but compared to everything else, that was pretty minimal. I was prepared - i purchased a breast pump and pumped milk for her to have during the afternoon. After the 3 days, i went back to nursing as usual, even when i started my MS meds.
The high dose of steroids helps the damage to heal fast, but it does not make one heal any better than they would without it. It just cuts the healing time a BUNCH. Thank goodness, becuase all i could do was lie in bed, crying from the pain. I could not pick up my child, (altho i could hold her in my sling if someone handed her to me) I could not take care of myself or feed myself. But after about a month, it got much better. I could use my hands, altho the discomfort was EXTREME. It was like holding onto a jackhammer for a long time, and the jarring, buzzing sensations that it brings.
For a long time, i could not do anything with my hair, i just coudl not use my hands. Putting my hair in a ponytail these days is like an amazing feat to me :) Picking my nose is like a club med vacation :)
But the most awful thing back then was not being able to lift my baby. I could hold her if she were handed to me, but people would constantly come up to me and take her away from me "Oh you poor thing, let me take that baby from you!" And I did not have the strength or dexterity to hold onto here, so they just plucked her from me.
It sounds odd, I could hold her, but not stop them from taking her? -I should not say that i did not have the strength - I was always strong, but i had no feeling in my hands and arms, i almost wouldnt even KNOW if i were holding her or not, so if they took her away, i couldn't tell, except that obviously i SAW them doing it. i could flail around with my dead spaghetti arms, but i could not grab her again. It was a very depressing time. I was so helpless, and i felt taken advantage of (everyone likes to hold a new baby, and now was their chance.) I am still angry about those days.
Long story short, FLASH forward, it took about 3 years, and my hands are still scratchy and clumsy, but i can do anything i need to do, except maybe read my mother's braille books. I realized how much feeling had finally came back about a year ago, when a light switch felt funny to me, and i looked at it, and saw it had dried paint on it, something i never noticed before. I told my husband about it, and instead of being happy, he was so sad for me, HAHA. But I can sew, turn pages, write, type (sort of) and i can ALMOST feel the difference betwen wet and dry (very important when doing cloth diapers haha)
I went from the broken glass hands to feeling like i was doing stuff with tongs, to feeling like i was doing stuff while wearing big rubber gloves, to feeling like my hand have dried crazy glue on them, if that makes sense.
I of course started to get scared, but still just thought i had a pinched nerve, altho i knew from research that numbness on both sides of the body was NOT good. I went to my MD, and had MRIs done.
By the end of the week, i was "asleep" from the chest down, and then it started to spread down my arms to my hands. Until this point, it was just tingly 'fallen asleep' prickles, but then it got very painful. I was terrified, i could not use my hands, my arms were like wet spaghetti, i could not use them effectively to do anything, and the pain was like when you chew on aluminum foil (if you have fillings), only in my arms, if that makes sense. Touching my sweet baby's soft skin was like dragging my hands across sharp, jagged glass. It was excruciating. This was all on my first mother's day, by the way. No one from either side of the family called or even gave me a stupid card either, LOL , altho i think my husband said happy mother's day, cautiously, haha, as he knew i was in a lot of pain.
So the next day, the Monday after Mother's day, i desperately called my MD AGAIN for test results. She called me back and said,
"Jennifer, it's not good. It's MS"
YIKES! Not the greatest way to deliver the news, but what else could she say? But i just fell apart. My newborn daughter was lying on the sofa looking at me, sobbing, i can still see her concerned face, staring at me, scared. the first thing i asked my MD was, "Will i have to wean?" and she said i probably would, as the drugs would be major. I had a hundred questions, none of which she could answer, so i headed back to my neurologist.
I was terrified, i called my husband, and he rushed home from work. I was just devastated, i remembered hearing Montel Williams had MS, and at that time I thought, "oh , how horrible, i bet that will happen to me" and sure enough it did. I didn't even know much about it, except that they say you can be blind one week, in a wheelchair the next. That's about right too, LOL. Well, to a point.
I went to that original neuro, the one that zapped me, and we talked, about medication, breast feeding, all that. I think he was OK with me breastfeeding on medication. (I had researched it right away and saw promising data on continuing).
My mother and aunt work in the medical field , and they jumped in to find the best neuorologist in the area, who fortunately turned out to be a leading MS doctor. He is also the sweetest man I hav eever had the pleasure of meeting. I chose him as my neurologist and continued seeing him. He looked at the data i collected concerning breastfeeding and agreed that as long as i was OK with it, he was too. So, i planned on starting Multiple Sclerosis meds soon. I chose Copaxone
First I was scheduled to have 3 days of at-home nurse administered IV steroids, to help me heal, as i was in such bad shape. I had the ttypical 1000 mg of solumedrol i believe, administered via IV, over the course of an hour, once a day for 3 days. The nurse starts the IV, helps with the first administration and then taps it off. I plug into the IV drip myself the next 2 days. I could not nurse my child until 4 hours after the drip finished, but compared to everything else, that was pretty minimal. I was prepared - i purchased a breast pump and pumped milk for her to have during the afternoon. After the 3 days, i went back to nursing as usual, even when i started my MS meds.
The high dose of steroids helps the damage to heal fast, but it does not make one heal any better than they would without it. It just cuts the healing time a BUNCH. Thank goodness, becuase all i could do was lie in bed, crying from the pain. I could not pick up my child, (altho i could hold her in my sling if someone handed her to me) I could not take care of myself or feed myself. But after about a month, it got much better. I could use my hands, altho the discomfort was EXTREME. It was like holding onto a jackhammer for a long time, and the jarring, buzzing sensations that it brings.
For a long time, i could not do anything with my hair, i just coudl not use my hands. Putting my hair in a ponytail these days is like an amazing feat to me :) Picking my nose is like a club med vacation :)
But the most awful thing back then was not being able to lift my baby. I could hold her if she were handed to me, but people would constantly come up to me and take her away from me "Oh you poor thing, let me take that baby from you!" And I did not have the strength or dexterity to hold onto here, so they just plucked her from me.
It sounds odd, I could hold her, but not stop them from taking her? -I should not say that i did not have the strength - I was always strong, but i had no feeling in my hands and arms, i almost wouldnt even KNOW if i were holding her or not, so if they took her away, i couldn't tell, except that obviously i SAW them doing it. i could flail around with my dead spaghetti arms, but i could not grab her again. It was a very depressing time. I was so helpless, and i felt taken advantage of (everyone likes to hold a new baby, and now was their chance.) I am still angry about those days.
Long story short, FLASH forward, it took about 3 years, and my hands are still scratchy and clumsy, but i can do anything i need to do, except maybe read my mother's braille books. I realized how much feeling had finally came back about a year ago, when a light switch felt funny to me, and i looked at it, and saw it had dried paint on it, something i never noticed before. I told my husband about it, and instead of being happy, he was so sad for me, HAHA. But I can sew, turn pages, write, type (sort of) and i can ALMOST feel the difference betwen wet and dry (very important when doing cloth diapers haha)
I went from the broken glass hands to feeling like i was doing stuff with tongs, to feeling like i was doing stuff while wearing big rubber gloves, to feeling like my hand have dried crazy glue on them, if that makes sense.
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