Hey folks.
I think I'm posting out of pure confusion and frustration because I have no idea where else to post. Where do you go when your doctors don't know what's wrong with you? When you don't fit any neat or obvious category of diagnosis, but you keep getting worse? I shouldn't post here, because I really don't think I have ALS...but at the same time I know this specific section of the boards ("Do I Have ALS?" not the general ALS section) is filled with people who are in a similar limbo.
One doctor told me I had "clear atrophy," but another told me that it wasn't "real atrophy" because it didn't show up on an EMG. So I'm missing a huge chunk of my thumb/thenar muscle, and I'm losing more. Where is it going? What the !@#!@# is causing it? It's so weird to have a doctor tell me that even though my once full and healthy muscle twitched like crazy and then went flat, it's not "real" because it didn't show up on a test. I understand why she said that, but the fact that I don't have muscle where I once did is a very real problem if you ask me.
I wouldn't be posting here if I wasn't getting worse. I got over the anxiety, I put a lot of this stuff out of my mind, really. Mentally, I've been doing great. It's easy to ignore the progression sometimes because it's sloooowwwww. But it's progression nonetheless.
The thing that's been bothering me lately is my face. I can't make or hold certain expressions without my muscles very clearly shaking. At first it was just my eyebrows shaking when I would push them down...then I couldn't hold my nose up without it shaking...then I couldn't smile for more than a few seconds without my lips and cheeks shaking. And now my eyelids "stick" when I move them up. I don't have a constantly drooping eyelid, but when I look up, my eyelid will take a moment to catch up with my eye.
Exertional weakness is a big issue. I can carry groceries and look like there's no problem (other than some shaking muscles in my arm) but after I'm done my arms become abnormally weak.
Other areas beyond my thumb have lost muscle.
And of course, after five years, my muscles still twitch every damn day. I still get fasciculations in my tongue, mouth, eyes, stomach, back, hand, legs, feet-- you name it. I miss the days when it was "only" twitching.
Some of my symptoms sound like myasthenia gravis, but I've read that MG doesn't cause fasciculations. There are other aspects of MG that my symptoms aren't consistent with. My symptoms aren't consistent with anything specific I've come across, which is a blessing in many ways, but it also makes figuring out what's wrong very difficult.
My EMGs have shown fasciculations and slowed nerve conduction, but that's it.
I just don't know where to go or what to do. I've been in this predicament before and it caused me stress and anxiety, so I stopped. Honestly, a lot of the stress and anxiety went away, I just wish my symptoms left too. I don't want to re-introduce the stress by running around to different doctors offices, but I also don't want to just ignore that something is clearly wrong with my health.
And I don't know who to talk to. So I'm here.
I think I'm posting out of pure confusion and frustration because I have no idea where else to post. Where do you go when your doctors don't know what's wrong with you? When you don't fit any neat or obvious category of diagnosis, but you keep getting worse? I shouldn't post here, because I really don't think I have ALS...but at the same time I know this specific section of the boards ("Do I Have ALS?" not the general ALS section) is filled with people who are in a similar limbo.
One doctor told me I had "clear atrophy," but another told me that it wasn't "real atrophy" because it didn't show up on an EMG. So I'm missing a huge chunk of my thumb/thenar muscle, and I'm losing more. Where is it going? What the !@#!@# is causing it? It's so weird to have a doctor tell me that even though my once full and healthy muscle twitched like crazy and then went flat, it's not "real" because it didn't show up on a test. I understand why she said that, but the fact that I don't have muscle where I once did is a very real problem if you ask me.
I wouldn't be posting here if I wasn't getting worse. I got over the anxiety, I put a lot of this stuff out of my mind, really. Mentally, I've been doing great. It's easy to ignore the progression sometimes because it's sloooowwwww. But it's progression nonetheless.
The thing that's been bothering me lately is my face. I can't make or hold certain expressions without my muscles very clearly shaking. At first it was just my eyebrows shaking when I would push them down...then I couldn't hold my nose up without it shaking...then I couldn't smile for more than a few seconds without my lips and cheeks shaking. And now my eyelids "stick" when I move them up. I don't have a constantly drooping eyelid, but when I look up, my eyelid will take a moment to catch up with my eye.
Exertional weakness is a big issue. I can carry groceries and look like there's no problem (other than some shaking muscles in my arm) but after I'm done my arms become abnormally weak.
Other areas beyond my thumb have lost muscle.
And of course, after five years, my muscles still twitch every damn day. I still get fasciculations in my tongue, mouth, eyes, stomach, back, hand, legs, feet-- you name it. I miss the days when it was "only" twitching.
Some of my symptoms sound like myasthenia gravis, but I've read that MG doesn't cause fasciculations. There are other aspects of MG that my symptoms aren't consistent with. My symptoms aren't consistent with anything specific I've come across, which is a blessing in many ways, but it also makes figuring out what's wrong very difficult.
My EMGs have shown fasciculations and slowed nerve conduction, but that's it.
I just don't know where to go or what to do. I've been in this predicament before and it caused me stress and anxiety, so I stopped. Honestly, a lot of the stress and anxiety went away, I just wish my symptoms left too. I don't want to re-introduce the stress by running around to different doctors offices, but I also don't want to just ignore that something is clearly wrong with my health.
And I don't know who to talk to. So I'm here.