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catlover
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I saw this post on another forum. Please pray for this young lady.
IndomitableAmy
Regular Member
24
04:38 PM
Reputation: 34,913
Blessings: 779
Posts: 139
Referrals: 0
Last-ditch medicine (prayers please)
I feel like a bit of a fool posting this at all, even more so this early.. but it's about something happening on Tuesday, May 6.. and I'm really scared.
I know I've posted things here about my brain damage or at least off of that.. but here's some explanation (that I can only hope I haven't given here before):
In September 2005 (on what happened to be a friend's/now boyfriend's birthday), I was diagnosed with multiple sclerosis (MS). (Now please take this time to forget about comparing me to those you know or have heard of with that disease. I probably don't have much in common with them symptom-wise.) There had been only two episodes that stood out to me, both in the past two months. Both involved significant memory loss with some not coming back.. and concentration being shot. I had an appointment with a neurologist (because I had an uneven tremor), but I just couldn't wait.. one night I lost control of half my face and it felt all tingly. My parents were afraid I'd had a stroke.. so I ended up at the hospital. A few days later, after a CT, an MRI, and a lumbar puncture, I was officially diagnosed. That's against protocol, diagnosing after one confirmed episode.. but I had so many lesions both active and evidence of past activity. The diagnosing neurologist (who "specialized" in MS as much as anyone else in that city) was close to retirement... and I, a presenting case, had more active lesions (more live damage) than he had ever seen before. Everybody hates surprising doctors like that, hm?
There are treatments for MS, but there is no cure. However, I've had trouble with the treatments. The first-line drugs are all injectables.. and my thin body doesn't respond kindly at all to injection. I tried them.. they didn't work with me. Between drug side-effects and injection-site reactions that supposedly never happen, I couldn't take them. There are only two more drugs available to try: one of them is also used to treat some cancers.. but the big deal with it is that it carries the risk of cardiotoxicity. My dad had a heart-attack when he was 49.. even if anyone would give me access to that drug, at this point I wouldn't take it.. I want my heart to be as healthy as it can be. There's only one other option..
... And it is that I face on Tuesday. It's an IV-drug that carries risk of infection (including a much greater chance of a rare but generally deadly brain infection) and possibility of liver damage (as do many drugs). It's got a black box warning for the first one. I'm scared, but it's not that I'm scared of infection, scared of dying from the drug.. I'm scared I won't be able to take it. That I'll be allergic to it or have some obscure side-effect that means I can't take the drug. I want it to be ok, I desperately want it to be ok.. and the drug to work for me. This drug, it's dangerous a bit.. but it's tested working twice as good as the injectables, less than half as much damage.. and I have a lot of that. (Examples I've gone from about a 3.5 GPA in aerospace engineering to having trouble understanding mail and filling out forms in three years.I've had to re-learn sarcasm. (Get that. I forgot sarcasm and subtle jokes.) There are some times (thankfully getting shorter) that I can't move. My thermoregulation has been compromised.. and my pulse and blood-pressure a bit with that. And, now and then, I have trouble controlling my breathing. I know it's a really rare thing, but many of my symptoms are really rare: I'm afraid that, without treatment, I'll die of it. That someday, my breathing will do me in or my pulse/blood-pressure. I'm nowhere near any of that, thank God, but I'm still afraid of it. When I was diagnosed, I was afraid of losing my mind.. but now, been there, done that, I'm simply afraid of it killing me. I don't want to wait on that. I hope, I hope to beyond hope that I can take this drug, that my body is ok with it, and that it works. Oh God, I hope it works.
There. More than you ever wanted to know about my health. I know this place is going down in a couple days.. and when it'll be down and back (though short is promised) is anyone's guess. My first infusion of the drug is Tuesday. Please remember me. Please join with me in hoping this works.. and please wish me peace.
IndomitableAmy
Regular Member
24
04:38 PM
Reputation: 34,913
Blessings: 779
Posts: 139
Referrals: 0
Last-ditch medicine (prayers please)
I feel like a bit of a fool posting this at all, even more so this early.. but it's about something happening on Tuesday, May 6.. and I'm really scared.
I know I've posted things here about my brain damage or at least off of that.. but here's some explanation (that I can only hope I haven't given here before):
In September 2005 (on what happened to be a friend's/now boyfriend's birthday), I was diagnosed with multiple sclerosis (MS). (Now please take this time to forget about comparing me to those you know or have heard of with that disease. I probably don't have much in common with them symptom-wise.) There had been only two episodes that stood out to me, both in the past two months. Both involved significant memory loss with some not coming back.. and concentration being shot. I had an appointment with a neurologist (because I had an uneven tremor), but I just couldn't wait.. one night I lost control of half my face and it felt all tingly. My parents were afraid I'd had a stroke.. so I ended up at the hospital. A few days later, after a CT, an MRI, and a lumbar puncture, I was officially diagnosed. That's against protocol, diagnosing after one confirmed episode.. but I had so many lesions both active and evidence of past activity. The diagnosing neurologist (who "specialized" in MS as much as anyone else in that city) was close to retirement... and I, a presenting case, had more active lesions (more live damage) than he had ever seen before. Everybody hates surprising doctors like that, hm?
There are treatments for MS, but there is no cure. However, I've had trouble with the treatments. The first-line drugs are all injectables.. and my thin body doesn't respond kindly at all to injection. I tried them.. they didn't work with me. Between drug side-effects and injection-site reactions that supposedly never happen, I couldn't take them. There are only two more drugs available to try: one of them is also used to treat some cancers.. but the big deal with it is that it carries the risk of cardiotoxicity. My dad had a heart-attack when he was 49.. even if anyone would give me access to that drug, at this point I wouldn't take it.. I want my heart to be as healthy as it can be. There's only one other option..
... And it is that I face on Tuesday. It's an IV-drug that carries risk of infection (including a much greater chance of a rare but generally deadly brain infection) and possibility of liver damage (as do many drugs). It's got a black box warning for the first one. I'm scared, but it's not that I'm scared of infection, scared of dying from the drug.. I'm scared I won't be able to take it. That I'll be allergic to it or have some obscure side-effect that means I can't take the drug. I want it to be ok, I desperately want it to be ok.. and the drug to work for me. This drug, it's dangerous a bit.. but it's tested working twice as good as the injectables, less than half as much damage.. and I have a lot of that. (Examples I've gone from about a 3.5 GPA in aerospace engineering to having trouble understanding mail and filling out forms in three years.I've had to re-learn sarcasm. (Get that. I forgot sarcasm and subtle jokes.) There are some times (thankfully getting shorter) that I can't move. My thermoregulation has been compromised.. and my pulse and blood-pressure a bit with that. And, now and then, I have trouble controlling my breathing. I know it's a really rare thing, but many of my symptoms are really rare: I'm afraid that, without treatment, I'll die of it. That someday, my breathing will do me in or my pulse/blood-pressure. I'm nowhere near any of that, thank God, but I'm still afraid of it. When I was diagnosed, I was afraid of losing my mind.. but now, been there, done that, I'm simply afraid of it killing me. I don't want to wait on that. I hope, I hope to beyond hope that I can take this drug, that my body is ok with it, and that it works. Oh God, I hope it works.
There. More than you ever wanted to know about my health. I know this place is going down in a couple days.. and when it'll be down and back (though short is promised) is anyone's guess. My first infusion of the drug is Tuesday. Please remember me. Please join with me in hoping this works.. and please wish me peace.
