After I started twitching I went through 3 months of the same hell many of us have been through. I kept it a secret from my mother and 5 older siblings until after my Neuro appt because my father died of ALS over 20 years ago and I did not want any of them to worry that I may also have it until I knew for sure. I knew twitching was a symptom and I didn't have to Google it. I also knew that my father did not have the "genetic" form, but it was over 20 years ago, and I thought perhaps back then, they just didn't know any better. So I was scared.
Now, after my Neuro appt. I'm glad I did keep it from my family. I now understand the lack of ALS symptoms I did not have, and the many other symptoms I did have not associated with ALS. I am SO happy with this diagnosis!! I will do whatever I can to live peacefully with BFS.
Now I feel silly even talking about BFS with my family. Not that it's not important or worthy of noting, but compared to what my father went through, I'd feel ashamed of treating this as anything more than an inconvenience (despite pain, distraction, lack of sleep etc.) compared to ALS and a disgrace to my father's fight. He was so strong throughout his illness, surely he has shown me that I can be strong with a benign condition.
Before this, despite a general overall postive outlook in life, and healthy lifestyle, I was constantly worried about every little ache and pain and sure we were caught up with health insurance and life insurance and never did anything too dangerous for fear that I'd be the one who would die in a freak accident.
Funny, now after being diagnosed with BFS I feel liberated and not so worried anymore! Now every twitch I have reminds me that other people have things worse and I can happily accept this diagnosis over the other choices. Maybe I NEEDED something ELSE to reassure me I wouldn't get ALS or maybe I needed to have ANYTHING to feel relief from worrying about what I MIGHT get someday down the line... who knows. I now consider myself healthy and more careful with what I eat to help me stay healthy for many years to come!! I can't say I won't get run over by a bus tomorrow, but I'm not worried I'll get ALS or that I have ALS. Having BFS have been quite liberating.
Not to sound "preachy" to anyone, but if you've gotten cleared by a Neuro and have no further sypmtoms and still are concerned about ALS, I encourage you to talk to SOMEONE about it and get your fears out on the table. I wish I had years ago. At the time of my father's diagnosis and death, family counseling wasn't common, and Hospice wasn't around. Maybe the stress of my father's death didn't surface until all these years later when I was actually closer to his same age he was at diagnosis and now that I have a husband and child. Maybe that worrying led to BFS ????
My favorite quote for years has been, "Get busy living or get busy dying."
I am happy to be alive!
Sue G.
Now, after my Neuro appt. I'm glad I did keep it from my family. I now understand the lack of ALS symptoms I did not have, and the many other symptoms I did have not associated with ALS. I am SO happy with this diagnosis!! I will do whatever I can to live peacefully with BFS.
Now I feel silly even talking about BFS with my family. Not that it's not important or worthy of noting, but compared to what my father went through, I'd feel ashamed of treating this as anything more than an inconvenience (despite pain, distraction, lack of sleep etc.) compared to ALS and a disgrace to my father's fight. He was so strong throughout his illness, surely he has shown me that I can be strong with a benign condition.
Before this, despite a general overall postive outlook in life, and healthy lifestyle, I was constantly worried about every little ache and pain and sure we were caught up with health insurance and life insurance and never did anything too dangerous for fear that I'd be the one who would die in a freak accident.
Funny, now after being diagnosed with BFS I feel liberated and not so worried anymore! Now every twitch I have reminds me that other people have things worse and I can happily accept this diagnosis over the other choices. Maybe I NEEDED something ELSE to reassure me I wouldn't get ALS or maybe I needed to have ANYTHING to feel relief from worrying about what I MIGHT get someday down the line... who knows. I now consider myself healthy and more careful with what I eat to help me stay healthy for many years to come!! I can't say I won't get run over by a bus tomorrow, but I'm not worried I'll get ALS or that I have ALS. Having BFS have been quite liberating.
Not to sound "preachy" to anyone, but if you've gotten cleared by a Neuro and have no further sypmtoms and still are concerned about ALS, I encourage you to talk to SOMEONE about it and get your fears out on the table. I wish I had years ago. At the time of my father's diagnosis and death, family counseling wasn't common, and Hospice wasn't around. Maybe the stress of my father's death didn't surface until all these years later when I was actually closer to his same age he was at diagnosis and now that I have a husband and child. Maybe that worrying led to BFS ????
My favorite quote for years has been, "Get busy living or get busy dying."
I am happy to be alive!
Sue G.
What is health anxiety but fear of not knowing what is wrong with us...why so we can get to it right away and treat it so we don't die...again it is about control. The funny thing and what you come to realize and what was so elegantly stated is that we are not in control. We can be so consumed with testing and fixing everything, we can get hit by lightening or not pay attention when crossing the street. I will again pass on the greatest wisdom I received from my dad after he got his diagnosis of cancer - and mind you the cancer did not kill him it was a sudden cardiac event where he was dead before he hit the floor while in the hospital being treated for his heart, at any rate he told me...I know what I have. I am going to die one day but not today. So why should I lose sleep or waste a day railing at what I have no control of. Better to just live today and then tomorrow and the day after that until it is my time. Some of us can not accept this diagnosis because we are striving to be in "control". The lesson that you are supposed to learn is that even when you are not in control of everything you CAN control how you respond. That is how people will really dreadful diseases live with them. Life is too short to waste days worrying about what you have no control over. This condition is not WHO YOU ARE! Why define yourself by it. Those who have accepted this diagnosis have learned this lesson.Smooches,Kit