Hello, everyone. I found this forum while looking specifically for an ALS support group, as I'm afraid I may have the disease. I know that the disease progresses differently for everyone, so I'd like to give my medical background and tell you all what my symptoms are and hopefully I can get some informed points of view regarding my condition, whatever it may be.
First off, my paternal aunt passed away from ALS about eight years ago. It was a very traumatic experience for our family, and we were all very stunned when she first showed symptoms because we weren't familiar at all with the disease and no one else in my father's side of the family had ever had it. My aunt was in her sixties and for her it started when she found she no longer had the strength to move the transmission (stick) in her car. Being completely ignorant of the disease, I stupidly thought that it was something spreading for her arm and that amputation could halt the spread of the disease. I quickly learned otherwise. She passed away after three years after losing her mobility and ability to speak.
Still, I did not worry that I could possibly get the disease, because I had looked it up and seen that only 5-10% of sufferers of this already rare illness had this disease due to some genetic issue in their family line.
Last December, I suffered from a herniated disc and that same month had a hypertensive crisis. After the hypertensive crisis, I've been on blood pressure medication and have been seeing a cardiologist every couple of months. I ended up getting a microdiscectomy because the herniation was pressing against the nerves in the cauda equina, which could have left me incontinent/permanently wheelchair-bound if not treated. Since I figured both of those situations were due to my being overweight, I've been on a strict diet and have lost about 55 pounds since December, and hope to lose at least 30 more. My cardiologist took blood tests and I had high levels of uric acid, cholesterol, and a whole host of other issues, but in my last blood test taken two weeks back, everything was normal except slightly elevated cholesterol levels, which I'm now working on.
This is all background information just in case my symptoms are being caused by something else other than motor neuron disease and I'm just too stupid to realize it.
Last January I had some discomfort in my right arm. My first thought was that it could be heart-related, or that I could have herniated my neck (since my recent health troubles were heart/spine-related). The discomfort was not exactly pain and is very difficult to describe. The arm seemed more difficult to manage than it usually is. Eventually I either got used to the problem or it went away, and I didn't give it much thought.
Last week, May 21st, I started having an issue with my right arm again. The fingers seemed clumsy and things I'd been able to do easily suddenly caused me trouble. My cell phone slipped from my fingers at least once a day. At the same time, my right leg started bothering me as well. The symptoms were similar. It seemed clumsier than usual, and I noticed it wasn't quite as strong as my left leg (I tried standing on just the right leg and found it impossible for more than a few seconds, tried standing on my toes with my left leg and immediately lost my balance).
Still, even with these symptoms, I did not consider a motor neuron disease, instead attributing my leg issues to recovery from my discectomy, even though this is the first time it's happened. I also noticed I was having trouble breathing deeply since three weeks ago, but attributed this to a pesky cold.
Then, both my left and right arms started getting an occasional achy feeling, like very light muscle spasms. I work at a desk job, and I've been intentionally avoiding any strenuous lifting because I don't want to re-injure my back, so this was very weird (I still feel it now).
The thing that has really scared me and has tied all of this together is fasciculations (I didn't even know what that word mean until yesterday). Yesterday morning, I woke up, and noticed that the muscles in my calves were twitching all over the place. Of course, I'd had the occasional muscle twitch (once even had an eye twitch) over the years, but this was non-stop, and almost unnoticeable if you weren't looking directly at it. Then I noticed that my both my calves were doing this! My feet were occasionally twitching as well. I looked up this twitching and found the term "benign fasciculation disorder." The article I found said that if you tense the muscles, the twitching should stop. I breathed a sigh of release and tensed my calf muscles, only to see the constant twitching did not stop.
The scarier thing for me is that since I never wear shorts, I have no clue how long these fasciculations have been going on without my noticing! I can't really feel them, and the movement is so slight (but constant) that unless you're looking directly at the calves, you won't notice them.
It's at that point that I remembered my aunt's initial symptoms and started considering that my situation might be ALS.
So, to recap, my symptoms right now are:
1. Constant, nonstop fasciculations in both calves and right foot
2. Occasional, very slight aches (I wouldn't even call them pain) in both biceps and forearms
3. Clumsiness in right hand
4. Weakness in right leg when compared to left
5. Difficulty breathing deeply (not sure if this is connected to anything else or really is just a cold)
I did go to a neurologist this morning, and mentioned my family history and symptoms, but he seemed to attribute the fasciculations to my recent weight loss. I googled this and found no relation between fasciculations and weight loss, and it also does nothing to explain any of my other symptoms. I have no medical training, though. He also did a blood test on me, and the results were:
Creatine Phosphokinase (CK): 94 (Normal is 50-230) U/l
CRP Protein (CRP): 0.23 (Normal is 0.00-0.045) mg/dl
He said that based on those results, he says he's inclined to think it's not ALS, but he didn't rule out the possibility. He gave me a prescription for something called Ternelin (1 mg). The generic name for it is Tizanidine. He says if it's effective, it lowers the chances of my having ALS even further, but that even if it's not, it does not mean that I have ALS.
As I look back at my posting, I realize I've gone overboard with detail, but I just didn't want to miss anything. What do all of you think? Am I worried over nothing? Should I request an EMG (it would have to be done at a different hospital, and the neurologist said he would only order one as a last resort)?
First off, my paternal aunt passed away from ALS about eight years ago. It was a very traumatic experience for our family, and we were all very stunned when she first showed symptoms because we weren't familiar at all with the disease and no one else in my father's side of the family had ever had it. My aunt was in her sixties and for her it started when she found she no longer had the strength to move the transmission (stick) in her car. Being completely ignorant of the disease, I stupidly thought that it was something spreading for her arm and that amputation could halt the spread of the disease. I quickly learned otherwise. She passed away after three years after losing her mobility and ability to speak.
Still, I did not worry that I could possibly get the disease, because I had looked it up and seen that only 5-10% of sufferers of this already rare illness had this disease due to some genetic issue in their family line.
Last December, I suffered from a herniated disc and that same month had a hypertensive crisis. After the hypertensive crisis, I've been on blood pressure medication and have been seeing a cardiologist every couple of months. I ended up getting a microdiscectomy because the herniation was pressing against the nerves in the cauda equina, which could have left me incontinent/permanently wheelchair-bound if not treated. Since I figured both of those situations were due to my being overweight, I've been on a strict diet and have lost about 55 pounds since December, and hope to lose at least 30 more. My cardiologist took blood tests and I had high levels of uric acid, cholesterol, and a whole host of other issues, but in my last blood test taken two weeks back, everything was normal except slightly elevated cholesterol levels, which I'm now working on.
This is all background information just in case my symptoms are being caused by something else other than motor neuron disease and I'm just too stupid to realize it.
Last January I had some discomfort in my right arm. My first thought was that it could be heart-related, or that I could have herniated my neck (since my recent health troubles were heart/spine-related). The discomfort was not exactly pain and is very difficult to describe. The arm seemed more difficult to manage than it usually is. Eventually I either got used to the problem or it went away, and I didn't give it much thought.
Last week, May 21st, I started having an issue with my right arm again. The fingers seemed clumsy and things I'd been able to do easily suddenly caused me trouble. My cell phone slipped from my fingers at least once a day. At the same time, my right leg started bothering me as well. The symptoms were similar. It seemed clumsier than usual, and I noticed it wasn't quite as strong as my left leg (I tried standing on just the right leg and found it impossible for more than a few seconds, tried standing on my toes with my left leg and immediately lost my balance).
Still, even with these symptoms, I did not consider a motor neuron disease, instead attributing my leg issues to recovery from my discectomy, even though this is the first time it's happened. I also noticed I was having trouble breathing deeply since three weeks ago, but attributed this to a pesky cold.
Then, both my left and right arms started getting an occasional achy feeling, like very light muscle spasms. I work at a desk job, and I've been intentionally avoiding any strenuous lifting because I don't want to re-injure my back, so this was very weird (I still feel it now).
The thing that has really scared me and has tied all of this together is fasciculations (I didn't even know what that word mean until yesterday). Yesterday morning, I woke up, and noticed that the muscles in my calves were twitching all over the place. Of course, I'd had the occasional muscle twitch (once even had an eye twitch) over the years, but this was non-stop, and almost unnoticeable if you weren't looking directly at it. Then I noticed that my both my calves were doing this! My feet were occasionally twitching as well. I looked up this twitching and found the term "benign fasciculation disorder." The article I found said that if you tense the muscles, the twitching should stop. I breathed a sigh of release and tensed my calf muscles, only to see the constant twitching did not stop.
The scarier thing for me is that since I never wear shorts, I have no clue how long these fasciculations have been going on without my noticing! I can't really feel them, and the movement is so slight (but constant) that unless you're looking directly at the calves, you won't notice them.
It's at that point that I remembered my aunt's initial symptoms and started considering that my situation might be ALS.
So, to recap, my symptoms right now are:
1. Constant, nonstop fasciculations in both calves and right foot
2. Occasional, very slight aches (I wouldn't even call them pain) in both biceps and forearms
3. Clumsiness in right hand
4. Weakness in right leg when compared to left
5. Difficulty breathing deeply (not sure if this is connected to anything else or really is just a cold)
I did go to a neurologist this morning, and mentioned my family history and symptoms, but he seemed to attribute the fasciculations to my recent weight loss. I googled this and found no relation between fasciculations and weight loss, and it also does nothing to explain any of my other symptoms. I have no medical training, though. He also did a blood test on me, and the results were:
Creatine Phosphokinase (CK): 94 (Normal is 50-230) U/l
CRP Protein (CRP): 0.23 (Normal is 0.00-0.045) mg/dl
He said that based on those results, he says he's inclined to think it's not ALS, but he didn't rule out the possibility. He gave me a prescription for something called Ternelin (1 mg). The generic name for it is Tizanidine. He says if it's effective, it lowers the chances of my having ALS even further, but that even if it's not, it does not mean that I have ALS.
As I look back at my posting, I realize I've gone overboard with detail, but I just didn't want to miss anything. What do all of you think? Am I worried over nothing? Should I request an EMG (it would have to be done at a different hospital, and the neurologist said he would only order one as a last resort)?