Hello everyone, this is my first post in these forums, but I have lurked in the shadows for several months reading many of your posts. I'm ready to post now, and it's gonna be long!
I am a 34-year old male who began experiencing muscle pain in both shoulders and both hips/thighs about 5 years ago. I believe that those pains may be attributable to wear & tear associated with years of playing sports and working out very hard. More recently (approx 9 months ago) I noticed some general weakness in my arms and legs and random muscle twitching. My wife and I went to Florida around New Year's. After we got back I noticed some extreme weakness and rapid muscle twitching in both legs as well as pain. I still wasn't really scared until I read about ALS, and found that muscle weakness accompanied with the fasics makes ALS a very likely cause.
I told my PCP about all of this. He agreed that the symptoms sounded similar to ALS, so we did an EMG in January. The results came back normal. In fact, the technician who performed the test said my muscles were firing like those of a 16-year old. Over the weeks to come, I began feeling extremely fatigued and dealt with some severe nausea. Changing the sheets on my 1-year old son's crib was completely exhausting. In February my calf muscles began tightening up. I looked like a zombie when I walked, and negotiating stairs was becoming a chore. Approx 4-5 times in Jan and Feb, my left arm from the shoulder to the hand went completely numb for hours at a time. Same thing for my left foot. Almost every day for 3 months an area on the side of my lower left leg went numb (especially while driving).
I'm very good friends with my PCP and kept him constantly updated on my condition. Even though my EMG was normal, he encouraged me to go see a local neurologist...hoping to give me some peace of mind. The Neuro put me through the usual paces. His only finding was fasics on the tongue (but he asked me to stick out my tongue, which I believe is improper). He told me to give 6 months to 1 year, and I would know for sure. Just what I wanted to hear!
So now I'm really beginning to freak out. I had never faced down the thought of death. Besides, I have a beautiful wife and child that need me...surely God wouldn't let this happen to me! Stress began taking a toll on me, and the muscle pain, stiffness, twitching, fatigue, and nausea all seemed to ramp up. I was desperate to find answers and believed that as badly as I had felt for over 2 months there was surely a good Neuro who could give me a definitive answer. So I scheduled an appointment at Mayo-Rochester. I was seen around the 1st of March. Dr. Hoover and Dr. Cutrer spent well over 1 hour with me listening to my story and again putting me through the paces. Strength, coordination, speech, tongue...nothing screamed ALS. They performed another EMG as well. By the way, at this point, I was so stiff that I could not make a calf muscle. Still the EMG was normal. The doctors informed that I did not have ALS, and theorized that all my problems could be the result of years of improper nutrition. Of course their closing comment was that it's always possible to test too early.
After getting back I continued to deal with more of the same. My doctor recommended some physical therapy which made matters worse. After PT, I would hurt so bad that I could barely stand up for more than a few minutes at a time. My arms were also beginning to ache and were becoming noticeably weaker.
Oddly enough, almost as soon as the fatigue and nausea began, it stopped. It has been well over 2 months since I've dealt with any noteworthy fatigue or nausea. In the past 2 months my strength also seems to be much improved from levels of 4-6 months ago. I am still stiff on occasion, but my calf muscles have loosened up a great deal, and I can again make a muscle with my calves. I seem to have lost no muscle tone in my arms or legs. My wife and I are moving into a new house, and I have been able to take many loads of boxes to the new place. My muscles are achy and stiff after several loads, but I'm not totally broken down and I don't think that would have been the case 4 months ago. I can lug my 22-pound kid all over without getting very tired. I also have no coordination problems. I can do the "drunk walk" with no problem whatsoever, and I'm still typing/writing very well. No problems swallowing.
That's the good. Now the bad...the twitching is still as much of a nuisance as it ever was. It's random and it's all over my body. I have particularly noticed it in the feet/ankle area. Many mornings after I wake up, the bottoms of my feet and my left ankle just twitch like crazy. I have noticed, however, that the twitching doesn't wake me up at night anymore. In fact, just after waking up my body feels very rested and as though there hasn't been a twitch all night long. Once I start my day though, here they come!
In the past 4 weeks, I've gotten this burning sensation on my tongue. It's not there all the time, and my speech hasn't been affected yet. Also, have felt my face going a little numb and a slight tingling sensation in various areas of the face.
So that's the whole of it. I came back home from Mayo intent on making the most out of every single day that God has graciously given me, and I think I've done okay in that regard. My wife thinks I'm going to be fine and that's what I want her to believe, so I've been living a bit of a lie for about 4 months but she's happy and that's all I care about! I apologize again for the length of this post, but hope some of you made it through and would be kind enough to share your thoughts. God Bless, MacD
I am a 34-year old male who began experiencing muscle pain in both shoulders and both hips/thighs about 5 years ago. I believe that those pains may be attributable to wear & tear associated with years of playing sports and working out very hard. More recently (approx 9 months ago) I noticed some general weakness in my arms and legs and random muscle twitching. My wife and I went to Florida around New Year's. After we got back I noticed some extreme weakness and rapid muscle twitching in both legs as well as pain. I still wasn't really scared until I read about ALS, and found that muscle weakness accompanied with the fasics makes ALS a very likely cause.
I told my PCP about all of this. He agreed that the symptoms sounded similar to ALS, so we did an EMG in January. The results came back normal. In fact, the technician who performed the test said my muscles were firing like those of a 16-year old. Over the weeks to come, I began feeling extremely fatigued and dealt with some severe nausea. Changing the sheets on my 1-year old son's crib was completely exhausting. In February my calf muscles began tightening up. I looked like a zombie when I walked, and negotiating stairs was becoming a chore. Approx 4-5 times in Jan and Feb, my left arm from the shoulder to the hand went completely numb for hours at a time. Same thing for my left foot. Almost every day for 3 months an area on the side of my lower left leg went numb (especially while driving).
I'm very good friends with my PCP and kept him constantly updated on my condition. Even though my EMG was normal, he encouraged me to go see a local neurologist...hoping to give me some peace of mind. The Neuro put me through the usual paces. His only finding was fasics on the tongue (but he asked me to stick out my tongue, which I believe is improper). He told me to give 6 months to 1 year, and I would know for sure. Just what I wanted to hear!

So now I'm really beginning to freak out. I had never faced down the thought of death. Besides, I have a beautiful wife and child that need me...surely God wouldn't let this happen to me! Stress began taking a toll on me, and the muscle pain, stiffness, twitching, fatigue, and nausea all seemed to ramp up. I was desperate to find answers and believed that as badly as I had felt for over 2 months there was surely a good Neuro who could give me a definitive answer. So I scheduled an appointment at Mayo-Rochester. I was seen around the 1st of March. Dr. Hoover and Dr. Cutrer spent well over 1 hour with me listening to my story and again putting me through the paces. Strength, coordination, speech, tongue...nothing screamed ALS. They performed another EMG as well. By the way, at this point, I was so stiff that I could not make a calf muscle. Still the EMG was normal. The doctors informed that I did not have ALS, and theorized that all my problems could be the result of years of improper nutrition. Of course their closing comment was that it's always possible to test too early.
After getting back I continued to deal with more of the same. My doctor recommended some physical therapy which made matters worse. After PT, I would hurt so bad that I could barely stand up for more than a few minutes at a time. My arms were also beginning to ache and were becoming noticeably weaker.
Oddly enough, almost as soon as the fatigue and nausea began, it stopped. It has been well over 2 months since I've dealt with any noteworthy fatigue or nausea. In the past 2 months my strength also seems to be much improved from levels of 4-6 months ago. I am still stiff on occasion, but my calf muscles have loosened up a great deal, and I can again make a muscle with my calves. I seem to have lost no muscle tone in my arms or legs. My wife and I are moving into a new house, and I have been able to take many loads of boxes to the new place. My muscles are achy and stiff after several loads, but I'm not totally broken down and I don't think that would have been the case 4 months ago. I can lug my 22-pound kid all over without getting very tired. I also have no coordination problems. I can do the "drunk walk" with no problem whatsoever, and I'm still typing/writing very well. No problems swallowing.
That's the good. Now the bad...the twitching is still as much of a nuisance as it ever was. It's random and it's all over my body. I have particularly noticed it in the feet/ankle area. Many mornings after I wake up, the bottoms of my feet and my left ankle just twitch like crazy. I have noticed, however, that the twitching doesn't wake me up at night anymore. In fact, just after waking up my body feels very rested and as though there hasn't been a twitch all night long. Once I start my day though, here they come!
In the past 4 weeks, I've gotten this burning sensation on my tongue. It's not there all the time, and my speech hasn't been affected yet. Also, have felt my face going a little numb and a slight tingling sensation in various areas of the face.
So that's the whole of it. I came back home from Mayo intent on making the most out of every single day that God has graciously given me, and I think I've done okay in that regard. My wife thinks I'm going to be fine and that's what I want her to believe, so I've been living a bit of a lie for about 4 months but she's happy and that's all I care about! I apologize again for the length of this post, but hope some of you made it through and would be kind enough to share your thoughts. God Bless, MacD