Well well..
I never thought I would be posting a "my story" online, but after finding this site and reading for close to three hours now, I believe I should write. Up until three hours ago, I was self diagnosed with ALS.. but not so much anymore, thanks to this site!
My symptoms started in June of 2003, 14 months ago. I was 31 at the time. It started with a thumb twitch which would come and go at will several times a day. I didn't think of it much then. After a few days of thumb twitching, I decide to do something which at the time seemed smart and perhaps even responsible, I decide "check out" my new symptom on the internet. It didn't take long before I read the ALS symptoms page, and the 3-6 years life expectancy that came along with it. I was now sure I was dying.
I would like to go back a few years for a moment. I was 20 years old. Life was good. I had a good job, a great girlfriend (whom I eventually married). One day I was driving home from her house when I was suddenly hit by an extreme sense of absolute terror which lasted about 3 – 5 minutes. I thought for sure I was having a heart attack or a stroke or something that would take my life in seconds. I had to pull over and wait for it too pass. I almost used my cell to call 911. After a few minutes I felt better and started driving again wondering what just happened. I excused it as a one time event, and tried to forget about it. The next week it happened again, and the following week again. I went to my family doctor and was told I was experiencing panic attacks. I was prescribed six Ativan pills. The panic attacks never happened again, up until June 2003, 11 years later.
High anxiety and panic attacks came on strong soon after the fasciculations, mostly because of the fear of having a major neurological disease. I kept this secret with everyone, including my spouse, thinking that I can get through this myself.. just a matter of time. By October of 2003, the fascics were so prevalent it engulfed my whole day and night. I tried to think of a way to tell my wife that she may need to find a new husband in a few years. The fear was real, I convinced myself I was headed towards a fight with ALS which would, in the end, not be able to be beat. Psychosomatic symptoms began. I started feeling weak in my arms, and my fingers. I started the “strength test” routines which most people talk about here, toe and heel walking. I would take stairs instead of elevators to prove my legs still worked, I would carry heavy things to prove my arms still worked. I found myself doing finger lifts at my desk to prove I could still use my fingers. Then, in November I told my wife and I went to see my doctor.
I told my doctor about the muscle twitches, but mostly the anxiety. She told me not to worry about the twitches, that they were a part of the anxiety. I have a family history of anxiety with panic attacks (four out of seven siblings, my dad and his dad). She referred me to a doctor who specializes in anxiety and a week later I received the first diagnosis in my life – Generalized Anxiety Disorder. He put me on a prescription called Rivotril, which is a benzo, same as Klonopin. This helped out immensely. He also taught me mediation skills, to train the brain to think in the “now” more than the future. I have not kept this up, but will try again cause it makes sense.
Now that my wife knew about this, we talked about it a lot. I was feeling better with the Rivotril, and decided to make a few changes in my life. I decided to lose weight. I was quite over weight, and was told by my doctor that being my size would not make things easy in the future. I knew she was right. On Feb 25 of 2004 I began to diet. I am now 70 pounds less I was when I started, and have never felt better in my life. I went off the Rivotril about five months ago, but recently had a major relapse with BFS and it’s scares. I felt myself falling back into a funk, like a depression, fear of death et al. I started to take more Rivotril again, because I didn’t want to ruin my diet. THEN.. I found this site, and it was the bingo that I needed. I do not have ALS. I am not going to die. I have an annoying condition known as BFS. I will have to deal with it. Today has been a good day!
Thank you to all who have posted, and I hope this post may help some.
43RichyThe43rd
I never thought I would be posting a "my story" online, but after finding this site and reading for close to three hours now, I believe I should write. Up until three hours ago, I was self diagnosed with ALS.. but not so much anymore, thanks to this site!
My symptoms started in June of 2003, 14 months ago. I was 31 at the time. It started with a thumb twitch which would come and go at will several times a day. I didn't think of it much then. After a few days of thumb twitching, I decide to do something which at the time seemed smart and perhaps even responsible, I decide "check out" my new symptom on the internet. It didn't take long before I read the ALS symptoms page, and the 3-6 years life expectancy that came along with it. I was now sure I was dying.
I would like to go back a few years for a moment. I was 20 years old. Life was good. I had a good job, a great girlfriend (whom I eventually married). One day I was driving home from her house when I was suddenly hit by an extreme sense of absolute terror which lasted about 3 – 5 minutes. I thought for sure I was having a heart attack or a stroke or something that would take my life in seconds. I had to pull over and wait for it too pass. I almost used my cell to call 911. After a few minutes I felt better and started driving again wondering what just happened. I excused it as a one time event, and tried to forget about it. The next week it happened again, and the following week again. I went to my family doctor and was told I was experiencing panic attacks. I was prescribed six Ativan pills. The panic attacks never happened again, up until June 2003, 11 years later.
High anxiety and panic attacks came on strong soon after the fasciculations, mostly because of the fear of having a major neurological disease. I kept this secret with everyone, including my spouse, thinking that I can get through this myself.. just a matter of time. By October of 2003, the fascics were so prevalent it engulfed my whole day and night. I tried to think of a way to tell my wife that she may need to find a new husband in a few years. The fear was real, I convinced myself I was headed towards a fight with ALS which would, in the end, not be able to be beat. Psychosomatic symptoms began. I started feeling weak in my arms, and my fingers. I started the “strength test” routines which most people talk about here, toe and heel walking. I would take stairs instead of elevators to prove my legs still worked, I would carry heavy things to prove my arms still worked. I found myself doing finger lifts at my desk to prove I could still use my fingers. Then, in November I told my wife and I went to see my doctor.
I told my doctor about the muscle twitches, but mostly the anxiety. She told me not to worry about the twitches, that they were a part of the anxiety. I have a family history of anxiety with panic attacks (four out of seven siblings, my dad and his dad). She referred me to a doctor who specializes in anxiety and a week later I received the first diagnosis in my life – Generalized Anxiety Disorder. He put me on a prescription called Rivotril, which is a benzo, same as Klonopin. This helped out immensely. He also taught me mediation skills, to train the brain to think in the “now” more than the future. I have not kept this up, but will try again cause it makes sense.
Now that my wife knew about this, we talked about it a lot. I was feeling better with the Rivotril, and decided to make a few changes in my life. I decided to lose weight. I was quite over weight, and was told by my doctor that being my size would not make things easy in the future. I knew she was right. On Feb 25 of 2004 I began to diet. I am now 70 pounds less I was when I started, and have never felt better in my life. I went off the Rivotril about five months ago, but recently had a major relapse with BFS and it’s scares. I felt myself falling back into a funk, like a depression, fear of death et al. I started to take more Rivotril again, because I didn’t want to ruin my diet. THEN.. I found this site, and it was the bingo that I needed. I do not have ALS. I am not going to die. I have an annoying condition known as BFS. I will have to deal with it. Today has been a good day!
Thank you to all who have posted, and I hope this post may help some.
43RichyThe43rd