Hello Everyone and Happy New Year.
I wanted to post an update for anyone that might be following my situation bc it is similar to their own. Its been since late May of 2009 since I have had an EMG. I just completed an EMG at ClevClinic last week. I still have many of my symptoms. A few have got better such as my fatigue, but some have gotten worse and some new ones have surfaced.
Better- Fatigue (this started when I changed my diet to gluten free. My Dr. said this could be attributed to less carbs, she said that whenever someone goes on a low carb diet that they get a burst of energy. Not sure if I agree but I guess time will tell.
-Twitches- My muscle twitching feels as though it is less frequent and not as big. I used to have little ones mixed with "thumpers" where my whole tricep or pec would move and you could see it through my shirt. Now the twitches are very fine, I almost cant see them but can still feel them.
Muscle soreness- This is better but not resolved. The stiffness is also better but not resolved.
Worse
-Muscles are seemingly flaccid, soft, and overall smaller. This is happening from head to toe and every muscle in between. It is involving muscles that I don’t really work out (facial muscles, neck, tongue) as well as those I do. I have noticed that all of these muscles have lost girth as well, especially my forearms. They look deflated and my skin is very loose. This is in spite of me continuing to work out as usual.
-Weight, I have lost around 25 pounds since Oct. I am not sure if this is due to gluten free diet which is certainly possible but the weight loss is very rapid. I have went on diets before and lost 6-10 pounds, 25 is unusual for me.
-Alcohol- any alcohol makes me sick. I get bad shooting pains behind my jaw under my ears when I drink any beverage with alcohol. I also get bad fatigue within 30 minutes and an upset stomach a few hours later. This is with only 2 or 3 glasses?
So, I got my EMG. I would like to briefly talk about the experience because it seemed a little strange to me. The gentleman doing the EMG did a thorough job in comparison of some of the others I had (I have had 4 since Sept 2008.) He tested a lot of spots, probably over 30 all on my right side. This included foot, leg, hip, glut, back(lower and upper), shoulder, hand, arm. I was watching his face during the exam and it looked as though he was frustrated, he kept getting a puzzled look on his face and shaking his head, but never said anything.
He finished and said he needed a second opinion since my last EMG was normal. Another doc came in the room and listened to the recording of the EMG for a few spots that I guess were suspect. They did this for a good 15 minutes. Then, he said he would send my DR. in to talk to me. I was freaked out at this point, but not surprised bc I thought there could be a chance they could find something and had prepared myself mentally for this. My Dr. came in and said that my EMG didn’t look much different from the one I had in may and said it was mostly normal (I haven’t seen it yet). I asked her about the Dr.s listening to it over and over and she said that they were listening to one spot in my foot that was probably just caused from wearing my shoes to tight? I finally asked her what she thought about MND and she said she cant rule it out but it is very unlikely at this point but cant say with 100% certainty. She said she wanted to follow up with one more clinical exam appt. in 6 months. I asked her if she had any idea what is causing my symptoms and she said "no idea" .
So, I am glad the EMG is clean. I am still very worried about what is going on with me, especially the weight. I know it is not ALS, I hope nobody minds that I still post here. I have had about 10 PM's in the last 2 months of people asking me if I ever got diagnosed with anything so I figured I should give an update. I am going to get referred to an endocrinologist and a gastro Dr. Take care and thank you to everyone for the kind words you have PM'ed me. I really appreciate the support and I hope 2010 is the year that the cure to ALS is finally discovered.
I wanted to post an update for anyone that might be following my situation bc it is similar to their own. Its been since late May of 2009 since I have had an EMG. I just completed an EMG at ClevClinic last week. I still have many of my symptoms. A few have got better such as my fatigue, but some have gotten worse and some new ones have surfaced.
Better- Fatigue (this started when I changed my diet to gluten free. My Dr. said this could be attributed to less carbs, she said that whenever someone goes on a low carb diet that they get a burst of energy. Not sure if I agree but I guess time will tell.
-Twitches- My muscle twitching feels as though it is less frequent and not as big. I used to have little ones mixed with "thumpers" where my whole tricep or pec would move and you could see it through my shirt. Now the twitches are very fine, I almost cant see them but can still feel them.
Muscle soreness- This is better but not resolved. The stiffness is also better but not resolved.
Worse
-Muscles are seemingly flaccid, soft, and overall smaller. This is happening from head to toe and every muscle in between. It is involving muscles that I don’t really work out (facial muscles, neck, tongue) as well as those I do. I have noticed that all of these muscles have lost girth as well, especially my forearms. They look deflated and my skin is very loose. This is in spite of me continuing to work out as usual.
-Weight, I have lost around 25 pounds since Oct. I am not sure if this is due to gluten free diet which is certainly possible but the weight loss is very rapid. I have went on diets before and lost 6-10 pounds, 25 is unusual for me.
-Alcohol- any alcohol makes me sick. I get bad shooting pains behind my jaw under my ears when I drink any beverage with alcohol. I also get bad fatigue within 30 minutes and an upset stomach a few hours later. This is with only 2 or 3 glasses?
So, I got my EMG. I would like to briefly talk about the experience because it seemed a little strange to me. The gentleman doing the EMG did a thorough job in comparison of some of the others I had (I have had 4 since Sept 2008.) He tested a lot of spots, probably over 30 all on my right side. This included foot, leg, hip, glut, back(lower and upper), shoulder, hand, arm. I was watching his face during the exam and it looked as though he was frustrated, he kept getting a puzzled look on his face and shaking his head, but never said anything.
He finished and said he needed a second opinion since my last EMG was normal. Another doc came in the room and listened to the recording of the EMG for a few spots that I guess were suspect. They did this for a good 15 minutes. Then, he said he would send my DR. in to talk to me. I was freaked out at this point, but not surprised bc I thought there could be a chance they could find something and had prepared myself mentally for this. My Dr. came in and said that my EMG didn’t look much different from the one I had in may and said it was mostly normal (I haven’t seen it yet). I asked her about the Dr.s listening to it over and over and she said that they were listening to one spot in my foot that was probably just caused from wearing my shoes to tight? I finally asked her what she thought about MND and she said she cant rule it out but it is very unlikely at this point but cant say with 100% certainty. She said she wanted to follow up with one more clinical exam appt. in 6 months. I asked her if she had any idea what is causing my symptoms and she said "no idea" .
So, I am glad the EMG is clean. I am still very worried about what is going on with me, especially the weight. I know it is not ALS, I hope nobody minds that I still post here. I have had about 10 PM's in the last 2 months of people asking me if I ever got diagnosed with anything so I figured I should give an update. I am going to get referred to an endocrinologist and a gastro Dr. Take care and thank you to everyone for the kind words you have PM'ed me. I really appreciate the support and I hope 2010 is the year that the cure to ALS is finally discovered.