planningguy
Senior member
- Joined
- Jun 5, 2008
- Messages
- 556
- Country
- US
- State
- Wyoming
- City
- Sheridan
I thought long and hard about a new thread title, but couldn't really come up with anything. So you get what crossed my brain after a long day at work. For those who haven't read my other thread, basically this is kind of a new page in my thinking and approach to figuring out what's going on in my body. I also thought that by writing a little about it here some of those who are nervous could take heart in knowing that there's a whole world of treatable possibilities out there.
Basically I've decided to put together a matrix of possibilities matched to my own personal symptoms. I was really hesitant to do this at first because I didn't want to come across as a hypochondriac obsessed with every little ache. That's not how I see myself. The truth is that based on what I have read in these forums, I feel the need to be more proactive in the diagnosis process.
My local Dr. and neurologist felt that my condition might be autoimmune, yet the specialist I saw at the U of U felt that possibility had been excluded. The frustrating part was, I didn't know why. I didn't know exactly what he was referring to, and I wasn't clear on what avenues had already been explored. It was a piece of medical opinion that floated by so quickly with the stream of others that I didn't even ask a follow up question.
The next steps for me are a muscle biopsy and a trip to the rheumatologist (Currently scheduled for October 9th). I've been told that the muscle biopsy is to exclude a metabolic disease process. Although my right side feels weaker, the U of U specialist wants the muscle taken from the left quad. He said that the results from the biopsy should close the door on muscular disease (The EMG of my right side and one point on my left leg was "normal" for which I am grateful, though I am interested on reading my chart when I gets here later this week).
So while I float along waiting for the next step, I had a couple of symptom questions for my "matrix." For those of you who might be reading this for the first time, please understand that these are just a couple of questions regarding a handful of symptoms. They are not the primary symptoms that concern me (significant muscle fatigue, weakness, cramping, and difficulty swallowing are among those that do), and my docs are not even thinking ALS right now. And so...:
1. I have a constant vibration feeling that goes on in my body, sometimes like a phone ringing. It's usually in my legs, but I feel it in my arms as well. I had written it off as being sensory, but a few times when I have glanced at the part of my body experiencing it I have realized that a muscle was contracting a couple of times a second for the duration of the "pulse." Is there a specific name for this type of twitching?
2. Sometimes my muscle twitches cause involuntary movement. I thought this was called clonus, but that seems to be more dramatic and involve large muscle groups. For me its been a smaller muscle group in my forearm and my thumb. Is it possible that the twitch is just hard enough or triggering a reflex?
3. I hate to drag this one up, but I am curious. Does it really matter where the twitching is? My twitching tends to be pretty global (Arms, legs, trunk, and face), but the fasciculation is more limited to my calves and shoulders. I also now have tongue twitching (though not wavy fasciculation that I'm aware of). The only reason that I ask this is in the Mayo Clinic's ALS synopsis they list among the symptoms, "Muscle cramps and twitching in your arms, shoulders and tongue." I realize the goal of the website is more to let people know when to start thinking about seeing a doctor, but the areas seemed pretty specific (and limited to the upper portion of the body).
That's all for now. Any thoughts would be great.
Robert
Basically I've decided to put together a matrix of possibilities matched to my own personal symptoms. I was really hesitant to do this at first because I didn't want to come across as a hypochondriac obsessed with every little ache. That's not how I see myself. The truth is that based on what I have read in these forums, I feel the need to be more proactive in the diagnosis process.
My local Dr. and neurologist felt that my condition might be autoimmune, yet the specialist I saw at the U of U felt that possibility had been excluded. The frustrating part was, I didn't know why. I didn't know exactly what he was referring to, and I wasn't clear on what avenues had already been explored. It was a piece of medical opinion that floated by so quickly with the stream of others that I didn't even ask a follow up question.
The next steps for me are a muscle biopsy and a trip to the rheumatologist (Currently scheduled for October 9th). I've been told that the muscle biopsy is to exclude a metabolic disease process. Although my right side feels weaker, the U of U specialist wants the muscle taken from the left quad. He said that the results from the biopsy should close the door on muscular disease (The EMG of my right side and one point on my left leg was "normal" for which I am grateful, though I am interested on reading my chart when I gets here later this week).
So while I float along waiting for the next step, I had a couple of symptom questions for my "matrix." For those of you who might be reading this for the first time, please understand that these are just a couple of questions regarding a handful of symptoms. They are not the primary symptoms that concern me (significant muscle fatigue, weakness, cramping, and difficulty swallowing are among those that do), and my docs are not even thinking ALS right now. And so...:
1. I have a constant vibration feeling that goes on in my body, sometimes like a phone ringing. It's usually in my legs, but I feel it in my arms as well. I had written it off as being sensory, but a few times when I have glanced at the part of my body experiencing it I have realized that a muscle was contracting a couple of times a second for the duration of the "pulse." Is there a specific name for this type of twitching?
2. Sometimes my muscle twitches cause involuntary movement. I thought this was called clonus, but that seems to be more dramatic and involve large muscle groups. For me its been a smaller muscle group in my forearm and my thumb. Is it possible that the twitch is just hard enough or triggering a reflex?
3. I hate to drag this one up, but I am curious. Does it really matter where the twitching is? My twitching tends to be pretty global (Arms, legs, trunk, and face), but the fasciculation is more limited to my calves and shoulders. I also now have tongue twitching (though not wavy fasciculation that I'm aware of). The only reason that I ask this is in the Mayo Clinic's ALS synopsis they list among the symptoms, "Muscle cramps and twitching in your arms, shoulders and tongue." I realize the goal of the website is more to let people know when to start thinking about seeing a doctor, but the areas seemed pretty specific (and limited to the upper portion of the body).
That's all for now. Any thoughts would be great.
Robert
