How I learned I have MS.
Posted: Sun Sep 30, 2007 3:14 pm
Hello Everyone,
It has taken me about eight months to trip across this site. I'm certianly glad I did. I was diagnosed with RRMS back in January and it came as quite a suprise! I hadn't had any symptoms until I woke up New Years Day with double vision, vertigo, and vomiting. Ok, I know it sounds like a hangover, but I hadn't had that much to drink. I thought maybe I had food poisoning. The vomiting finally subsided late that afternoon, but the double vision and vertigo persisted.
The next day I called my primary care doctor and she told me to come on in. When I got there she examined me, took some blood, gave me a 'script to help with the spinning, and said she call me when the bloodwork got back. She called the next day, saying the results looked normal and asking how I felt. When I told her no improvement, she immediately recommended an MRI, and set one up for the following day. I thought to myself, 'cool, never had one of those. Now I'll know what's in my head". It never occured to me it might be scar tissue.
So off I went to the hospital (no I wasn't driving, I let my longtime girlfriend do that. Which is scary enough in itself. Not that she is a bad driver, she just seems to attract people who are. I mean, the woman has had 11 cars totaled out from under her. But I'm getting off track..) where they were kind enough to bring me a wheelchair so I wouldn't stumble all over the place. Yes I let her push the wheelchair.
So out comes the insurance card, off goes the jewlery, and down the tube I go. Twice. I should have known something was up when they wanted to inject some unspecified cold fluid into my arm and run the scan again. Actually it wasn't bad. The lights were turned down, the temperature was on the cool side, and I got to lay down. Perfect for sleeping. Even the small space of the MRI tube wasn't a bother (I used to go spelunking). The hardest part was trying to lay still. Anyway, it got done and off we went. Didn't even see an accident.
When we finally got home about six that evening the mesage light on our answering machine was blinking. (No we didn't go straight home, why should I stay at home and feel bad when I can go out and do it.) It was a message from my doctor. She said she had received the MRI results and it looked like I have Mulitple Sclerosis, and I had an apppointment with a neurologist for the next afternoon. Ok, that wasn't expected. Up till then I was a perfectly health 45 year old male, never sick other than the occasional cold. Even my weight and cholesterol numbers were good - no mean trick for a guy that grew up in, and lives in, the deep fried south.
This being the information age, I googled MS. I got to the National MS Society website and started sucking up information. I went to bed that night emotionally numb and wondering what the neurologist visit the next day would bring.
Next morning, I wake up and most of my left side is numb and I'm starting to lose my voice. I got scared. So I called my doctor and told her my symptoms were getting worse. She suggested that I call 911 and go to the hospital. I did.
As it turns out, the neurologist I was going to see later that day was on rounds at the hospital. He walked in to my room, introduced himself and started giving me an exam. Follow my finger, touch your nose, squeeze my finger, can you feel this, etc. Then he sat down and started to explain what MS is, and what my MRI had indicated. Apparently I've had MS for a long time and have many lesions. It was just that the one that brought on this exacerbation was in a particularly noticable spot. My brain stem (the center of balance, so I'm told). The neurologist ask me if I ever had any unusual vision problems and I told him yes, about five years ago I noticed that my vision became blurry when I got hot. I went to an opthamologist and had my eyes examined at the time and was told my vision was fine. I chalked it up to getting older. Turns out vision problems are often the first symptom to show up with MS. Who'd a thunk it. Then I mentioned that for the previous two or three months I had been noticing numbness in my outer two left fingers. I had chalked that one up to an old neck injury.
So I spent the night in the hospital getting solumedrol IVs to try and bring my vision back to normal (it worked), and getting some instruction on how to use a cane. I was set up with an IV nurse to show me how to continue the solumedrol at home for three more days and at home physical therapy three days a week for four weeks. That pretty well got me over the exacerbation. But I was out of work for seven weeks. Fortunately I have temporary disability insurance through work.
I started on Rebif in February. It's working out ok, with minimal physical side effects but I do have occasional feelings of anxiety for no reason. I never had them before.
Today, I stilll have some numbness on my left side, occasionally feel dizzy or have blurred or even double vision, but I get around unaided and can hold down my job. So I'm feeling pretty good about life. I try not to worry about the future and the unpredictability of MS. It will be what it will be. I do what I can to take care of myself, eat right, exercise, take my meds, and stay informed. When it comes right down to it all you can do is get on with life.
I hope this post isn't to boring or self serving I look forward to reading and writing here for a long time.
It has taken me about eight months to trip across this site. I'm certianly glad I did. I was diagnosed with RRMS back in January and it came as quite a suprise! I hadn't had any symptoms until I woke up New Years Day with double vision, vertigo, and vomiting. Ok, I know it sounds like a hangover, but I hadn't had that much to drink. I thought maybe I had food poisoning. The vomiting finally subsided late that afternoon, but the double vision and vertigo persisted.
The next day I called my primary care doctor and she told me to come on in. When I got there she examined me, took some blood, gave me a 'script to help with the spinning, and said she call me when the bloodwork got back. She called the next day, saying the results looked normal and asking how I felt. When I told her no improvement, she immediately recommended an MRI, and set one up for the following day. I thought to myself, 'cool, never had one of those. Now I'll know what's in my head". It never occured to me it might be scar tissue.
So off I went to the hospital (no I wasn't driving, I let my longtime girlfriend do that. Which is scary enough in itself. Not that she is a bad driver, she just seems to attract people who are. I mean, the woman has had 11 cars totaled out from under her. But I'm getting off track..) where they were kind enough to bring me a wheelchair so I wouldn't stumble all over the place. Yes I let her push the wheelchair.
So out comes the insurance card, off goes the jewlery, and down the tube I go. Twice. I should have known something was up when they wanted to inject some unspecified cold fluid into my arm and run the scan again. Actually it wasn't bad. The lights were turned down, the temperature was on the cool side, and I got to lay down. Perfect for sleeping. Even the small space of the MRI tube wasn't a bother (I used to go spelunking). The hardest part was trying to lay still. Anyway, it got done and off we went. Didn't even see an accident.
When we finally got home about six that evening the mesage light on our answering machine was blinking. (No we didn't go straight home, why should I stay at home and feel bad when I can go out and do it.) It was a message from my doctor. She said she had received the MRI results and it looked like I have Mulitple Sclerosis, and I had an apppointment with a neurologist for the next afternoon. Ok, that wasn't expected. Up till then I was a perfectly health 45 year old male, never sick other than the occasional cold. Even my weight and cholesterol numbers were good - no mean trick for a guy that grew up in, and lives in, the deep fried south.
This being the information age, I googled MS. I got to the National MS Society website and started sucking up information. I went to bed that night emotionally numb and wondering what the neurologist visit the next day would bring.
Next morning, I wake up and most of my left side is numb and I'm starting to lose my voice. I got scared. So I called my doctor and told her my symptoms were getting worse. She suggested that I call 911 and go to the hospital. I did.
As it turns out, the neurologist I was going to see later that day was on rounds at the hospital. He walked in to my room, introduced himself and started giving me an exam. Follow my finger, touch your nose, squeeze my finger, can you feel this, etc. Then he sat down and started to explain what MS is, and what my MRI had indicated. Apparently I've had MS for a long time and have many lesions. It was just that the one that brought on this exacerbation was in a particularly noticable spot. My brain stem (the center of balance, so I'm told). The neurologist ask me if I ever had any unusual vision problems and I told him yes, about five years ago I noticed that my vision became blurry when I got hot. I went to an opthamologist and had my eyes examined at the time and was told my vision was fine. I chalked it up to getting older. Turns out vision problems are often the first symptom to show up with MS. Who'd a thunk it. Then I mentioned that for the previous two or three months I had been noticing numbness in my outer two left fingers. I had chalked that one up to an old neck injury.
So I spent the night in the hospital getting solumedrol IVs to try and bring my vision back to normal (it worked), and getting some instruction on how to use a cane. I was set up with an IV nurse to show me how to continue the solumedrol at home for three more days and at home physical therapy three days a week for four weeks. That pretty well got me over the exacerbation. But I was out of work for seven weeks. Fortunately I have temporary disability insurance through work.
I started on Rebif in February. It's working out ok, with minimal physical side effects but I do have occasional feelings of anxiety for no reason. I never had them before.
Today, I stilll have some numbness on my left side, occasionally feel dizzy or have blurred or even double vision, but I get around unaided and can hold down my job. So I'm feeling pretty good about life. I try not to worry about the future and the unpredictability of MS. It will be what it will be. I do what I can to take care of myself, eat right, exercise, take my meds, and stay informed. When it comes right down to it all you can do is get on with life.
I hope this post isn't to boring or self serving I look forward to reading and writing here for a long time.
