New to MS, not confident in treatments
Posted: Sat Jul 24, 2010 12:25 am
I got diagnosed with MS on June 13th. I went into the doctor a few days earlier as my torso and lower felt weird, like I had a thin sheet of plastic over it. I could still feel, it just felt different. I had an upper thigh that had already felt that way since I had a really bad sunburn at an airshow a few years back. I also kind of went in as over the last year or two, I could look sharply down, and feel a slight tingling in my toes. I figured I just had a pinched nerve or some damage from being in the toss around armored vehicles in the Army.
I had an MRI/CT of my neck/head, and a lumbar puncture. I had a single 3mm and a few small spots in the brain, "something" on the spine, and the LP showed slightly elevated white blood cells and OG bands. Of course all these symptoms occurred when silicon breast implants exploded back in the 90s, so it is far from conclusive.
Anyway, so after this first "episode", I get diagnosed and the Neurologist immediately wants me to start on Tysabri. Initially I thought "ok", then I started researching MS. Both the national and international MS societies say doctors shouldn't diagnose until after the 2nd "episode", which made me somewhat doubt the diagnosis. On top of that, Tysabri has a 1 in 1000 chance of outright killing me, a risk I just can't justify for a skin sensation I've already gotten completely used to.
But over the last couple days I've messed up a few words when typing, an activity I often do 10+ hours a day (I am a programming). Nothing major, but not just a normal typo, but replacing a word completely. On top of that I often mix up 2 characters or the space between words. I know thats no big deal to many of ya'll, but its my bread and butter and gets me a little worried, though helps me be more confident I do have MS. On top of that, I have been having a VERY hard time staying awake at work lately. I've always had a bit of a hard time, and once when I tried to quit my mountain dew addiction for a couple weeks I was very hard pressed to stay awake. Lately though, its been getting really really bad, and its VERY hard to stay awake (and I often fail, though I usually wake up feeling refreshed). I think this may be related to MS too. BUT, I can stay up all night without any difficulty, so I still think it could just be me being bored at work
So anyway, I was going to get a second opinion but have been procrastinating a bit, getting a grip on what I have. I'll get one scheduled next week, but now I'm wondering about some things.
First of all, nobody knows what causes MS, the symptoms are very vague in many cases, and nobody knows the cure. Why on earth would I want to pay $30K to $80K per year for drugs that at most reduce my "episodes" by half, statistically. Plus, all of those treatments (I won't consider Tysabri, and Copax whatever seems to be the best that I would go with) have side effects. I'm a bit paranoid about our greedy corporations in this country, and for good reason, and I just can't see why I would bother taking one of these VERY expensive (and hard for me to justify) drugs just to "reduce" the number of "episodes" when the only one I've had (and am still having) is so minor.
I guess I logged onto here to just get some other opinions. I figure if they don't know what causes a disease, or how to cure it, and are really guessing when it comes to treating it, why the heck should I help make the drug companies richer when it "might" help me?
I'm sure if the symptoms got really bad there would be no question, I'm just not getting a good feeling in my gut about the options.
All I've done since being diagnosed is go onto a multi-vitamin, as I eat like crap and ignore vegetables.
I'm also very curious how a disease can have 300,000 or more people in the US diagnosed with it, and I can't seem to find a single extremely large database put together on everybody to see commonalities to find the cause. I mean surely they could ask people questions like their diet, activities, past illnesses, etc, etc, and come up with some VERY good evidence in such a large population. Maybe its the programmer in me, I don't know.
I'm thinking I need to find a local support group once I get my 2nd opinion, as I'm just not feeling comfortable with this disease at all, even though the results of it at this point are hardly noticeable.
Thanks for any input,
Bad Syntax
Oh, I'm 37, Male, 6'2 and 210 (bit of a gut, not muscle!, but easily hidden). I spent about half my life in various parts of Texas, the rest in Germany, Hawaii, California and NY. 8 years in the Infantry and the rest doing nerdy computer stuff.
I had an MRI/CT of my neck/head, and a lumbar puncture. I had a single 3mm and a few small spots in the brain, "something" on the spine, and the LP showed slightly elevated white blood cells and OG bands. Of course all these symptoms occurred when silicon breast implants exploded back in the 90s, so it is far from conclusive.
Anyway, so after this first "episode", I get diagnosed and the Neurologist immediately wants me to start on Tysabri. Initially I thought "ok", then I started researching MS. Both the national and international MS societies say doctors shouldn't diagnose until after the 2nd "episode", which made me somewhat doubt the diagnosis. On top of that, Tysabri has a 1 in 1000 chance of outright killing me, a risk I just can't justify for a skin sensation I've already gotten completely used to.
But over the last couple days I've messed up a few words when typing, an activity I often do 10+ hours a day (I am a programming). Nothing major, but not just a normal typo, but replacing a word completely. On top of that I often mix up 2 characters or the space between words. I know thats no big deal to many of ya'll, but its my bread and butter and gets me a little worried, though helps me be more confident I do have MS. On top of that, I have been having a VERY hard time staying awake at work lately. I've always had a bit of a hard time, and once when I tried to quit my mountain dew addiction for a couple weeks I was very hard pressed to stay awake. Lately though, its been getting really really bad, and its VERY hard to stay awake (and I often fail, though I usually wake up feeling refreshed). I think this may be related to MS too. BUT, I can stay up all night without any difficulty, so I still think it could just be me being bored at work
So anyway, I was going to get a second opinion but have been procrastinating a bit, getting a grip on what I have. I'll get one scheduled next week, but now I'm wondering about some things.
First of all, nobody knows what causes MS, the symptoms are very vague in many cases, and nobody knows the cure. Why on earth would I want to pay $30K to $80K per year for drugs that at most reduce my "episodes" by half, statistically. Plus, all of those treatments (I won't consider Tysabri, and Copax whatever seems to be the best that I would go with) have side effects. I'm a bit paranoid about our greedy corporations in this country, and for good reason, and I just can't see why I would bother taking one of these VERY expensive (and hard for me to justify) drugs just to "reduce" the number of "episodes" when the only one I've had (and am still having) is so minor.
I guess I logged onto here to just get some other opinions. I figure if they don't know what causes a disease, or how to cure it, and are really guessing when it comes to treating it, why the heck should I help make the drug companies richer when it "might" help me?
I'm sure if the symptoms got really bad there would be no question, I'm just not getting a good feeling in my gut about the options.
All I've done since being diagnosed is go onto a multi-vitamin, as I eat like crap and ignore vegetables.
I'm also very curious how a disease can have 300,000 or more people in the US diagnosed with it, and I can't seem to find a single extremely large database put together on everybody to see commonalities to find the cause. I mean surely they could ask people questions like their diet, activities, past illnesses, etc, etc, and come up with some VERY good evidence in such a large population. Maybe its the programmer in me, I don't know.
I'm thinking I need to find a local support group once I get my 2nd opinion, as I'm just not feeling comfortable with this disease at all, even though the results of it at this point are hardly noticeable.
Thanks for any input,
Bad Syntax
Oh, I'm 37, Male, 6'2 and 210 (bit of a gut, not muscle!, but easily hidden). I spent about half my life in various parts of Texas, the rest in Germany, Hawaii, California and NY. 8 years in the Infantry and the rest doing nerdy computer stuff.