Jamiet
Senior member
- Joined
- Nov 27, 2006
- Messages
- 616
- Reason
- Learn about ALS
- Country
- US
- State
- Louisiana
- City
- Carencro
Hello all,
I've read alot of the stories here and would like to share mine to get ordinary lay persons opinions whom are living these nighmares that we share. My symptoms started in Aug 2006 with widespread twitching. Nothing thought of it, however, went to neuro in 9/06. Stated it was anxiety / depression. 10/06 noticed my left arm was smaller than right. This put me into a real panic, based upon my research and the confirmation from my wife. Her words were "your left arm shrunk" when i pointed it out to her. Since then, the twitches have changed course, moving from all over, and not real focused, then to "electricity" type in my legs and certain leg muscles, now to like little popping, here and there and sometimes a "hot spot", such as my abdomen for about a day and my left arm on and off. I and only i notice the following symptoms have also progress in the last 30 days. I've got scallop marks and a rough tongue, and it appears to be smaller, specifically, the left "driver" side, although, this could be nervousness and me examining it so much. Also, for the last few days, it's like burning and tingling, or just irritated. Some quivering, but not alot and not all the time. My right foot, the heel seems smaller and my boots are definitely looser. I've had episodes of clumsieness and dizzy spells, throat hurting. I also get the chills alot. Had extreme fatigue for about a month, but is a little better now, however, it seems from about 3:00AM to 10:00AM, its really difficult, can' sleep and then can't get out of bed. My hands and forearms hurt in the mornings, to the point my wife has to massage them. My thumbs and the area around them appear to be atrophying, but it's minimal and no one else can see this except for me, but it seems pretty symmetrical on both sides, happening at the same time. My right leg also feel funny and the reflexes are brisk, noted by neuro in houston. They used to be normal?
I've got this ticking noise that i and only i can like hear or almost feel, it goes from the back of my head / neck down the base of my spine. Really hear this at night or in the morning, in bed or when the phone is to my ear.
I've had all the MRI's, about 40 tubes of blood and two EMGs, all clean and normal. The latest EMG was Oct 30, which was within normal limits, no denervation, but i'm almost sure they picked up facultations, as i could hear the ticking. I've seen 4 neuros, including one at Houston Methodist ALS Clinic, but this was Oct. 30, and it seems alot of progression (the foot, tongue and thumbs) since then. Seen another neuro a week ago, showed him my tounge, but he says again, he's followed 100 to 200 ALS patients in his history and i dont show the signs, come back in 1.5 mos.
What do you guys think, as i will either have to not be able to walk, talk, eat, it seems before they become concerned.
I've read alot of the stories here and would like to share mine to get ordinary lay persons opinions whom are living these nighmares that we share. My symptoms started in Aug 2006 with widespread twitching. Nothing thought of it, however, went to neuro in 9/06. Stated it was anxiety / depression. 10/06 noticed my left arm was smaller than right. This put me into a real panic, based upon my research and the confirmation from my wife. Her words were "your left arm shrunk" when i pointed it out to her. Since then, the twitches have changed course, moving from all over, and not real focused, then to "electricity" type in my legs and certain leg muscles, now to like little popping, here and there and sometimes a "hot spot", such as my abdomen for about a day and my left arm on and off. I and only i notice the following symptoms have also progress in the last 30 days. I've got scallop marks and a rough tongue, and it appears to be smaller, specifically, the left "driver" side, although, this could be nervousness and me examining it so much. Also, for the last few days, it's like burning and tingling, or just irritated. Some quivering, but not alot and not all the time. My right foot, the heel seems smaller and my boots are definitely looser. I've had episodes of clumsieness and dizzy spells, throat hurting. I also get the chills alot. Had extreme fatigue for about a month, but is a little better now, however, it seems from about 3:00AM to 10:00AM, its really difficult, can' sleep and then can't get out of bed. My hands and forearms hurt in the mornings, to the point my wife has to massage them. My thumbs and the area around them appear to be atrophying, but it's minimal and no one else can see this except for me, but it seems pretty symmetrical on both sides, happening at the same time. My right leg also feel funny and the reflexes are brisk, noted by neuro in houston. They used to be normal?
I've got this ticking noise that i and only i can like hear or almost feel, it goes from the back of my head / neck down the base of my spine. Really hear this at night or in the morning, in bed or when the phone is to my ear.
I've had all the MRI's, about 40 tubes of blood and two EMGs, all clean and normal. The latest EMG was Oct 30, which was within normal limits, no denervation, but i'm almost sure they picked up facultations, as i could hear the ticking. I've seen 4 neuros, including one at Houston Methodist ALS Clinic, but this was Oct. 30, and it seems alot of progression (the foot, tongue and thumbs) since then. Seen another neuro a week ago, showed him my tounge, but he says again, he's followed 100 to 200 ALS patients in his history and i dont show the signs, come back in 1.5 mos.
What do you guys think, as i will either have to not be able to walk, talk, eat, it seems before they become concerned.