This post has been harder for me to write than when I posted Brita’s story. I began to get sick when I was in 10th grade. The first really symptom that I can remember is my left leg started to drag. It would just stop working at random times. I can remember in gym class that year we had to run the mile for a grade and I did my best but I was going to fail the class because I could run it fast enough because my leg was dragging. We went to the doctors and lets just say the only reason they did an MRI was because my grandma pushed for it. When that came back they called us in because they needed to talk to us. They said that there was what they call lesions on the brain. They show up as white spots on the brain. They told us that they needed to do a spinal tap to rule out MS.
The spinal tap in and of it self was a huge ordeal to say the least. I got the spinal tap on a Thursday and by Saturday I was so sick. I had a huge headache and was throwing up. So we went to the ER because it was obvious that my spinal tap hadn’t sealed. When we got the ER they made me lay in the waiting for about an hour until they took me back to a room. After they knew what was going on they wanted to send me home because the guy that could fix it was on call and he didn’t want to come and do a blood patch. He finally came in after my grandparents raised a living hell because I could have died if I didn’t get a blood patch ASAP.
When the results of the spinal tap came back they called us in again and told my and my grandparents and I had Multiple Sclerosis. They wanted to start me right away on Avonex. I don’t really remember much of the next couple of months. I think I was still numb to the whole situation. What I do remember is how sick the medication made me every weekend. I took the shot on Friday nights and spent the whole weekend with flu like symptoms. I stopped taking that medication after awhile and started on Copaxone. With that one I had to take a shot everyday and that didn’t last very long either.
I was pretty stable and not much went on until a year ago and that is when my hand went numb and it got hard to do anything with them. Slow I have been able to use them more but it feels like they are asleep all of the time anymore. I started on Tysabri about a year ago and so far it has worked the best but I also has a major problem with it as well. You can develop a condition known as PML that will basically make you a vegetable. They are finding out that the longer you are on the drug the higher your chances are of getting this serious condition. I am not sure how much longer I will be on this medication but I don’t have any other options right now.
That is my story in a nutshell. If you have any other question feel free to ask me I will answer any questions that you may have.
19 Comments on Me & The MS
Hey Girl…wow, what a story! Kinda makes me mad at the gym teacher for thinking to fail you for not running fast enough. I wonder if it dawned on her/him that something could be wrong.
The ER folks often just don't care. I don't know if it's because they see so much they get hard, or if they just don't care, and are only there for the money. I'm so glad your Grandparents pushed them to do the right thing. CANNOT believe the on call guy wouldn't come in!! I believe I would have had to complain to the highest person on the totem pole about that.
Wow! I can't imagine how scary it was to suddenly have your leg stop working. I had a spinal tap last month, and I was so scared when they told me what could happen if it didn't seal correctly and I'd need a blood patch. I almost didn't want the spinal tap at that point!
I really hope they're able to find a medication or treatment that can be more helpful to you in the near future. In the mean time, stay strong and keeping fighting the good fight!
Wait a minute…the only person that could've done the blood patch didn't.want.to? Oh hell no. We're talking about a medical necessity, and he didn't.want.to. He needs his ass kicked.
When the doc told me I would have to do the shots I thought I was going to die. I am not very good about needles. My neighbor across the street has MS and she's a nurse. She offered to do it for me. I was in the process of deliberating what medication would be best for me when I found out I had carpal tunnel and NOT MS! The physical therapy was so much easier than the "flu" every weekend! I feel for you. I only went through the emotions of thinking I had MS for 6 months. I had lesions on my MRI. When I went back for my 6 month MRI update with the new neuro. he told me he didn't understand why the other neuro said it was probably MS. So many tears for nothing!! There were no new lesions (thank goodness) and the new neuro said the old lesions weren't in the areas of my symptoms anyway. You can't put a price on good doctors. But I'd like to put out a hit on some bad ones!!
Hi, wow…you are so brave to say the least. I couldn't imagine my leg to get all jello…but I still can relate to you somehow. I suffer from severe depression and some other nasty mental illnesses as well as a cardiac disease no one seems to have a clue where it came from-.- I can't really die of my illnesses, the danger is mostly that I could kill myself as a result (although I'm worried about my heart) What I just wanted to say was…that I know how diseases can change and affect people's lifes and how hard it is to cope with it.
My heart goes out to you and I wish you the best of luck.
Thank God for your grandmother, I love a gutsy woman who pushes for what she knows is right. It's scary how often authority figures try to fob you off because they don't want to spend any more energy/money on individual cases.
I'm so sorry you're going through this but it sounds like it's making you stronger inside. I really hope they can find better drugs for your condition. Keep the faith!
I am so sorry that you must endure this. One of my closest friends has MS, she takes shots every morning, goes to work every day (teacher) and just ran a half-marathon. I pray that the medication will keep MS under control for you too!
So sorry you have to endure this but way to be a stronger person and share your experiences and your feelings with all of us. Have faith and know that you are in my thoughts.
That sucks that your symptoms started at such an early age. I hope they were able to stabilize you on new meds. There always seems be a new med on the market. So there is hope.
I was diagnosed with benign MS at 41. My right arm suddenly started tingling for several months then stopped as suddenly.
It was a fluke that they discovered I had MS. I originally went to an optometrist because I had an eye migraine. At the time I didn't know what it was. To make a long story even longer, I ended up at a neurologist because my Internist was thorough.
At the examination, they discovered I had a problem with my reflexes and also had limited sensation in a portion of my left foot. Had the MRI and they found lesions.
Then I went through a slew of sadistic tests including a LP. I couldn't lift my head for several days afterward and had to have a blood patch, which was more painful than the LP.
My MS is in the sensory area of the brain. My last attack was in 2007.
What an ordeal to go through for such a young person. I didn't realize there were so many medications and treatments involved. I admire your courage and positive attitude. Jenn
OK, now I have to admit that you've got me in tears. I can't imagine how scary it must have been to be so young and to have to go through what you did. Honestly though, I was remembering back to a year ago when I began to get very sick all at once. I started losing my ability to walk, was losing my sight, and began having tremors in my legs and arms. Of course I have some really great doctors, but still having to fight with insurance companies and specialists has really been a pain. It's been the scariest time of my life, and I have a wonderful support system and a very strong faith system, but still I guess it's just the fear of the unknown. I had to push to get my nutrient levels looked at, and am glad I did. I have sever nutrient deficiencies, among them B12. The B12 deficiency completely mimics MS. So since this discovery (which took months and caused a lot of nerve damage) I've been on B12 shots everyday, among other thins like iron and other vitamins too – I'm deficient in just about everything. These things have helped, but lately I've gone backwards a bit. MS still hasn't been ruled out, and since my father had a bout with it a few years back (he had the kind that appears and then suddenly leaves, and has been OK since), I still fear that MS may be the cause of my symptoms and not just my malabsorption issues.
Again, thanks so much for sharing your struggles with this most unpredictable of diseases. Peace.;)
Congratulations on your Sits Day! For some reason Monty Python's Bright Side of Life is running through my head. Dealing with adversity thru laughter I guess. Enjoy your day in the spotlight.
Stopping by from SITS & am enjoying reading your posts. One of my best friends was recently diagnosed with MS, so your posts on this subject are especially interesting to me. Stay strong & enjoy your day!
Hey Girl…wow, what a story! Kinda makes me mad at the gym teacher for thinking to fail you for not running fast enough. I wonder if it dawned on her/him that something could be wrong.
The ER folks often just don't care. I don't know if it's because they see so much they get hard, or if they just don't care, and are only there for the money. I'm so glad your Grandparents pushed them to do the right thing. CANNOT believe the on call guy wouldn't come in!! I believe I would have had to complain to the highest person on the totem pole about that.
Your grandmother sounds like a great woman.
~M
Wow! I can't imagine how scary it was to suddenly have your leg stop working. I had a spinal tap last month, and I was so scared when they told me what could happen if it didn't seal correctly and I'd need a blood patch. I almost didn't want the spinal tap at that point!
I really hope they're able to find a medication or treatment that can be more helpful to you in the near future. In the mean time, stay strong and keeping fighting the good fight!
Wait a minute…the only person that could've done the blood patch didn't.want.to? Oh hell no. We're talking about a medical necessity, and he didn't.want.to. He needs his ass kicked.
What a tuff thing to have to go through! Especially so young.
I'm leaving you a love label.
I don't know what to say.
Except, hooray for your grandparents. Boo to lazy medical profession.
Wow- that's quite an ordeal you have and are living. I'm sorry you are having so many problems currently.
When the doc told me I would have to do the shots I thought I was going to die. I am not very good about needles. My neighbor across the street has MS and she's a nurse. She offered to do it for me. I was in the process of deliberating what medication would be best for me when I found out I had carpal tunnel and NOT MS! The physical therapy was so much easier than the "flu" every weekend! I feel for you. I only went through the emotions of thinking I had MS for 6 months. I had lesions on my MRI. When I went back for my 6 month MRI update with the new neuro. he told me he didn't understand why the other neuro said it was probably MS. So many tears for nothing!! There were no new lesions (thank goodness) and the new neuro said the old lesions weren't in the areas of my symptoms anyway. You can't put a price on good doctors. But I'd like to put out a hit on some bad ones!!
Hi, wow…you are so brave to say the least. I couldn't imagine my leg to get all jello…but I still can relate to you somehow. I suffer from severe depression and some other nasty mental illnesses as well as a cardiac disease no one seems to have a clue where it came from-.-
I can't really die of my illnesses, the danger is mostly that I could kill myself as a result (although I'm worried about my heart)
What I just wanted to say was…that I know how diseases can change and affect people's lifes and how hard it is to cope with it.
My heart goes out to you and I wish you the best of luck.
xoxo
p.s. Happy SITS Day^^
Thank God for your grandmother, I love a gutsy woman who pushes for what she knows is right. It's scary how often authority figures try to fob you off because they don't want to spend any more energy/money on individual cases.
I'm so sorry you're going through this but it sounds like it's making you stronger inside. I really hope they can find better drugs for your condition. Keep the faith!
Love ya grlie.
LOVE your new background by he way. I hope you're enjoying your SITS day!
I am so sorry that you must endure this. One of my closest friends has MS, she takes shots every morning, goes to work every day (teacher) and just ran a half-marathon. I pray that the medication will keep MS under control for you too!
You are VERY courageous and I'm sorry you're going through this.
So sorry you have to endure this but way to be a stronger person and share your experiences and your feelings with all of us. Have faith and know that you are in my thoughts.
Hi Heather,
That sucks that your symptoms started at such an early age. I hope they were able to stabilize you on new meds. There always seems be a new med on the market. So there is hope.
I was diagnosed with benign MS at 41. My right arm suddenly started tingling for several months then stopped as suddenly.
It was a fluke that they discovered I had MS. I originally went to an optometrist because I had an eye migraine. At the time I didn't know what it was. To make a long story even longer, I ended up at a neurologist because my Internist was thorough.
At the examination, they discovered I had a problem with my reflexes and also had limited sensation in a portion of my left foot. Had the MRI and they found lesions.
Then I went through a slew of sadistic tests including a LP. I couldn't lift my head for several days afterward and had to have a blood patch, which was more painful than the LP.
My MS is in the sensory area of the brain. My last attack was in 2007.
Thoughts and prayers,
Lauren
What an ordeal to go through for such a young person. I didn't realize there were so many medications and treatments involved. I admire your courage and positive attitude. Jenn
OK, now I have to admit that you've got me in tears. I can't imagine how scary it must have been to be so young and to have to go through what you did. Honestly though, I was remembering back to a year ago when I began to get very sick all at once. I started losing my ability to walk, was losing my sight, and began having tremors in my legs and arms. Of course I have some really great doctors, but still having to fight with insurance companies and specialists has really been a pain. It's been the scariest time of my life, and I have a wonderful support system and a very strong faith system, but still I guess it's just the fear of the unknown. I had to push to get my nutrient levels looked at, and am glad I did. I have sever nutrient deficiencies, among them B12. The B12 deficiency completely mimics MS. So since this discovery (which took months and caused a lot of nerve damage) I've been on B12 shots everyday, among other thins like iron and other vitamins too – I'm deficient in just about everything. These things have helped, but lately I've gone backwards a bit. MS still hasn't been ruled out, and since my father had a bout with it a few years back (he had the kind that appears and then suddenly leaves, and has been OK since), I still fear that MS may be the cause of my symptoms and not just my malabsorption issues.
Again, thanks so much for sharing your struggles with this most unpredictable of diseases. Peace.;)
I guess the thing that shocked me most was how young you were! I thought this was something that started in your thirties. That's me told. x
Congratulations on your Sits Day!
For some reason Monty Python's Bright Side of Life is running through my head.
Dealing with adversity thru laughter I guess.
Enjoy your day in the spotlight.
Stopping by from SITS & am enjoying reading your posts. One of my best friends was recently diagnosed with MS, so your posts on this subject are especially interesting to me. Stay strong & enjoy your day!