wendya432
Active member
- Joined
- Jul 10, 2013
- Messages
- 75
- Reason
- Learn about ALS
- Country
- US
- State
- mi
- City
- Davison
I had an appointment with my neurologist today. I went in because I've had more progression and I wanted him to see. I made sure to tell him everything that was going on and how it was affecting my life. He seemed to really listen this time. Told me that he's been thinking about me and trying to figure out what I have. He seemed concerned, and I have more weakness than last time he checked. Especially in my legs.
So, he had me get labs done to check my muscle enzymes. And we talked again about getting a muscle biopsy. He had been putting it off because he thought it would be a "low yield" result. But now he is saying that maybe we should. I gather he wants my labs back before he decides. But, he also told me to think about it and try to decide if I want to do it or not. He said if we do it, and it doesn't tell us anything than we are in the same spot and I had to go through it for nothing. But there is a chance it could tell us something. So I'm not sure what to think. Has anyone else had one done? Does it show anything with PLS? He mentioned that they don't usually show anything if the EMG is fine and mine was. I'm pretty much willing to do whatever tests will help him figure this out. But anxious about doing something expensive and invasive if it isn't going to give us answers.
Also he said that he's thinking about sending me to the Mayo clinic or the Cleveland clinic. He said they have more experience with rare things, and he thinks they will be able to figure out what is going on and give me a diagnosis. He said he just can't figure out what it is that I have. But we both agree that getting a diagnosis is important.
So I see him again in 2 months and we go over my labs, decide on the muscle biopsy, and maybe do a referral to probably cleveland as it is closer to me.
In a way I'm glad he's doing more to figure this out. But, I also still feel kind of like he's not even sure what is going on. I'm really surprised he hasn't mentioned PLS, despite the fact that I have all UMN symptoms, and everything else we've tested has been fine.
So that's it in a nutshell.
So, he had me get labs done to check my muscle enzymes. And we talked again about getting a muscle biopsy. He had been putting it off because he thought it would be a "low yield" result. But now he is saying that maybe we should. I gather he wants my labs back before he decides. But, he also told me to think about it and try to decide if I want to do it or not. He said if we do it, and it doesn't tell us anything than we are in the same spot and I had to go through it for nothing. But there is a chance it could tell us something. So I'm not sure what to think. Has anyone else had one done? Does it show anything with PLS? He mentioned that they don't usually show anything if the EMG is fine and mine was. I'm pretty much willing to do whatever tests will help him figure this out. But anxious about doing something expensive and invasive if it isn't going to give us answers.
Also he said that he's thinking about sending me to the Mayo clinic or the Cleveland clinic. He said they have more experience with rare things, and he thinks they will be able to figure out what is going on and give me a diagnosis. He said he just can't figure out what it is that I have. But we both agree that getting a diagnosis is important.
So I see him again in 2 months and we go over my labs, decide on the muscle biopsy, and maybe do a referral to probably cleveland as it is closer to me.
In a way I'm glad he's doing more to figure this out. But, I also still feel kind of like he's not even sure what is going on. I'm really surprised he hasn't mentioned PLS, despite the fact that I have all UMN symptoms, and everything else we've tested has been fine.
So that's it in a nutshell.