pecas
Active member
- Joined
- Jul 31, 2014
- Messages
- 78
- Reason
- PALS
- Diagnosis
- 07/2014
- Country
- US
- State
- TX
- City
- Central
Hello all,
I was just diagnosed on Tuesday. It was not totally unexpected, although my journey has been a quick one compared to many. With hindsight, we've tracked my symptoms back to February. I was in NYC with a friend and she kept chiding me for walking slowly, very much contrary to my nature. I also fell at one point on the street (and several folks stopped to help me, contrary to popular lore about New Yorkers).
The first time I noticed that my gait just wasn't right was in Atlanta in April. Again, walking everywhere. I mentioned it to a couple of folks and we just chalked it up to getting older. I'm 42.
In May, I noticed with some irritation that I started tripping a lot, and my gait was becoming increasingly wonky. Then I put on my running shoes, and decided to start running again. Ha! I got about half of a block and I could not reliably force my right foot to clear the ground. That was a sober walk back to the house. And the beginning of my taking this little glitch seriously.
In June, I spent time with my aunt and uncle for vacation. He's a doctor and his friend is a pain specialist. We all poked and prodded at my leg and they figured out that I had foot drop, and something else that was making my knee pop back with every step, hence the wonky gait. But there was no pain, so we weren't sure what it might be (at least, no one was guessing out loud).
I piddled around a little with finding a neurologist and making an appointment because I know that neurologists are not folks with solutions. I have had a lot of illness and death in my family over the last few years, and I am a very savvy consumer of medical care. But I finally self-referred and made an appointment. Honestly, I was expecting to hear that I had damaged the nerves in my right leg somehow.
She did a full neuro exam, including EMGs and nerve conduction. That sucked. Then she asked me to call my husband and have him meet me to hear the possible diagnoses. Uh oh. She was scheduling me for blood tests and several MRIs. It could be anything from a pinched nerve, she said, to ALS. She knew then it wasn't a pinched nerve, but she was trying to get me not to hop on Google. That was sweet.
During that examination, she saw hyperreflexia and clonus, as well as nerve damage in both legs. I just happened to mention to her almost as I was walking out that I had been cramping in my legs for a few months. It didn't even occur to me that was related. She wasn't surprised to hear that.
My blood tests and MRIs were clear. I got my diagnosis 1.5 weeks after my initial exam (I pushed to get the appointments and results quickly). I started on rilutek a couple days later.
I am waiting for an appointment at the ALS clinic in San Antonio for a second opinion. But there wasn't any equivocating by my neurologist. I have classic symptoms and none that aren't explained. Oh, and the morning after the appointment, I woke up with these funny fluttery twitches all over my legs. I emailed her, just in case it might be related. I didn't know the word fasciculations at that point. Now they are with me every day, all over my body below my armpits.
So that's my story. I'm young and early days. Scared as hell, but settling into it. My first reaction was to sell everything and bolt. My husband and 12-year-old daughter weren't so much into that idea. I've come around to the realization that I need to stay put and dig into my community. I've learned from these forums that isolation as the disease progresses is a real issue. So I'm going to keep working and just adjust my client load so that I can check out when I need to freak, and travel while I still can. I work for myself, so that's a blessing. I am used to traveling extensively domestically and internationally. That'll be a big adjustment for me.
I am grateful for this forum. I'm leary that it's totally open to the public, but as there's no alternative, I'll deal with that!
Thanks for reading along. And thanks in advance for being here for all of us sad souls to land after this bomb drops on our heads.
Pecas
I was just diagnosed on Tuesday. It was not totally unexpected, although my journey has been a quick one compared to many. With hindsight, we've tracked my symptoms back to February. I was in NYC with a friend and she kept chiding me for walking slowly, very much contrary to my nature. I also fell at one point on the street (and several folks stopped to help me, contrary to popular lore about New Yorkers).
The first time I noticed that my gait just wasn't right was in Atlanta in April. Again, walking everywhere. I mentioned it to a couple of folks and we just chalked it up to getting older. I'm 42.
In May, I noticed with some irritation that I started tripping a lot, and my gait was becoming increasingly wonky. Then I put on my running shoes, and decided to start running again. Ha! I got about half of a block and I could not reliably force my right foot to clear the ground. That was a sober walk back to the house. And the beginning of my taking this little glitch seriously.
In June, I spent time with my aunt and uncle for vacation. He's a doctor and his friend is a pain specialist. We all poked and prodded at my leg and they figured out that I had foot drop, and something else that was making my knee pop back with every step, hence the wonky gait. But there was no pain, so we weren't sure what it might be (at least, no one was guessing out loud).
I piddled around a little with finding a neurologist and making an appointment because I know that neurologists are not folks with solutions. I have had a lot of illness and death in my family over the last few years, and I am a very savvy consumer of medical care. But I finally self-referred and made an appointment. Honestly, I was expecting to hear that I had damaged the nerves in my right leg somehow.
She did a full neuro exam, including EMGs and nerve conduction. That sucked. Then she asked me to call my husband and have him meet me to hear the possible diagnoses. Uh oh. She was scheduling me for blood tests and several MRIs. It could be anything from a pinched nerve, she said, to ALS. She knew then it wasn't a pinched nerve, but she was trying to get me not to hop on Google. That was sweet.
During that examination, she saw hyperreflexia and clonus, as well as nerve damage in both legs. I just happened to mention to her almost as I was walking out that I had been cramping in my legs for a few months. It didn't even occur to me that was related. She wasn't surprised to hear that.
My blood tests and MRIs were clear. I got my diagnosis 1.5 weeks after my initial exam (I pushed to get the appointments and results quickly). I started on rilutek a couple days later.
I am waiting for an appointment at the ALS clinic in San Antonio for a second opinion. But there wasn't any equivocating by my neurologist. I have classic symptoms and none that aren't explained. Oh, and the morning after the appointment, I woke up with these funny fluttery twitches all over my legs. I emailed her, just in case it might be related. I didn't know the word fasciculations at that point. Now they are with me every day, all over my body below my armpits.
So that's my story. I'm young and early days. Scared as hell, but settling into it. My first reaction was to sell everything and bolt. My husband and 12-year-old daughter weren't so much into that idea. I've come around to the realization that I need to stay put and dig into my community. I've learned from these forums that isolation as the disease progresses is a real issue. So I'm going to keep working and just adjust my client load so that I can check out when I need to freak, and travel while I still can. I work for myself, so that's a blessing. I am used to traveling extensively domestically and internationally. That'll be a big adjustment for me.
I am grateful for this forum. I'm leary that it's totally open to the public, but as there's no alternative, I'll deal with that!
Thanks for reading along. And thanks in advance for being here for all of us sad souls to land after this bomb drops on our heads.
Pecas
