Kim C
Active member
- Joined
- Jul 31, 2013
- Messages
- 82
- Reason
- CALS
- Diagnosis
- 07/2013
- Country
- US
- State
- KY
- City
- Nicholasville
Hi,
Didn't think I would ever be here on my own. My mother died of ALS early May and I was on for her. Now I'm on for me. I started having fasiculations in my calves in late June. After they didn't stop I saw my family physician and after running blood work which was normal, he referred me to a neurologist who diagnosed mom. The doctor's speciality is EMG and muscle disease. Saw her in early August and when she recalled my mother, she immediately went into a higher concern mode and set me up for NCS and EMG. Following the initial appointment the fasics started everywhere and have continued. Yesterday I went for the EMG & NCS. The NCS was normal. The EMG had three abnormal areas: 1) Right calf; 2) some muscle in my back; 3) tongue area. The doctor couldn't give me an "all clear" or a diagnosis either. She initially said if the EMG report were on someone with no family history that she wouldn't be the least bit concerned. But since I had a mother with ALS, she was concerned. Mom was an only child, as was her father. He did not have ALS, but there is not a great deal of history to go on here. She set me up for a f/U in six months. Then she called me this morning offering me a second opinion at the Univ. of KY ALS cilinc, or genetic testing. She was extremely sympathetic to the emotional strain of not knowing and thought this might help some. I decided to go with a second opinion at UK, same place my mom went. She feels like the results will be the same. She said right now I do not have ALS but when I asked her if she thought it would progress into ALS, she said there was a possiblity but she couldn't put any odd on it. She calls my case "complicated", I guess because of mom, the fasics, the EMG issues, and the fact that I have no weakness or atrophy at this time. She said she usually didn't see ALS people this early in the disease course. Usually weakness has set in, as we all know. She put me on five supplements: Resveretrol, Co-Emzyme Q10, Vit C, Vit B-12, B-Complex and something else that slips my battered brain at this time. I am terrified. I don't know how I'm supposed to exist just waiting for the "shoe to drop" and ALS rear it's head. Of course I expect the worse. I know I don't have it right now, but I feel pretty sure the doc thinks I will develope it. I lift weights, walk, and don't have any weakness right now that I know of. My speech & swallowing is fine. Just needed to talk to someone. BTW, my mother had the EMG and told me it didn't hurt. I'm here to say those needles hurt like heck yesterday when she was digging into the muscles. Thoughts about genetic testing?
Didn't think I would ever be here on my own. My mother died of ALS early May and I was on for her. Now I'm on for me. I started having fasiculations in my calves in late June. After they didn't stop I saw my family physician and after running blood work which was normal, he referred me to a neurologist who diagnosed mom. The doctor's speciality is EMG and muscle disease. Saw her in early August and when she recalled my mother, she immediately went into a higher concern mode and set me up for NCS and EMG. Following the initial appointment the fasics started everywhere and have continued. Yesterday I went for the EMG & NCS. The NCS was normal. The EMG had three abnormal areas: 1) Right calf; 2) some muscle in my back; 3) tongue area. The doctor couldn't give me an "all clear" or a diagnosis either. She initially said if the EMG report were on someone with no family history that she wouldn't be the least bit concerned. But since I had a mother with ALS, she was concerned. Mom was an only child, as was her father. He did not have ALS, but there is not a great deal of history to go on here. She set me up for a f/U in six months. Then she called me this morning offering me a second opinion at the Univ. of KY ALS cilinc, or genetic testing. She was extremely sympathetic to the emotional strain of not knowing and thought this might help some. I decided to go with a second opinion at UK, same place my mom went. She feels like the results will be the same. She said right now I do not have ALS but when I asked her if she thought it would progress into ALS, she said there was a possiblity but she couldn't put any odd on it. She calls my case "complicated", I guess because of mom, the fasics, the EMG issues, and the fact that I have no weakness or atrophy at this time. She said she usually didn't see ALS people this early in the disease course. Usually weakness has set in, as we all know. She put me on five supplements: Resveretrol, Co-Emzyme Q10, Vit C, Vit B-12, B-Complex and something else that slips my battered brain at this time. I am terrified. I don't know how I'm supposed to exist just waiting for the "shoe to drop" and ALS rear it's head. Of course I expect the worse. I know I don't have it right now, but I feel pretty sure the doc thinks I will develope it. I lift weights, walk, and don't have any weakness right now that I know of. My speech & swallowing is fine. Just needed to talk to someone. BTW, my mother had the EMG and told me it didn't hurt. I'm here to say those needles hurt like heck yesterday when she was digging into the muscles. Thoughts about genetic testing?
