U
Unknown
Guest
As some of you have read in my posts..........I've been having difficulty w/ the "I think i have ALS syndrome". I wish I never googled the internet. Its been like a crazy nightmare.
I started w/ widespread muscle pain, followed by twitches, Fatigue, and muscle cramping. Its been pretty continual for 6 weeks now. I dont get a break.
I've seen 2 nueros who both seem to think nothing of my brisk knee reflexes and absentee Babinski reflex (Which I know I had at some point).
I had an MRI Of Brain
MRI Of C-Spine
An EMG Upper & Lower
I even saw a Rhematologist who feels this cant be Fibromyalgia because I only had 1 trigger point. She said its more likely to be neurological & the symptoms just haven't manifested completely.
Well, I couldn't get this off my mind & I am embarrassed to say, Im still having difficulty but have to start somewhere.
I made an appointment at Beth Israel here in NYC w/ the Director of ALS. As soon as I started telling him my story.........he said, in a reassuring, not nasty way........."Doesnt sound like a typical ALS story". He checked me out. Thought nothing of my Brisk reflexes. (For those of you who mentioned, TWO brisk reflexes are not a concern) were right.
I was (& secretly still am) concerned about the absent Babinski. My feet do nothing. They used to. I didn't want to question & requestion everything he said, so I just asked if not having a Babinski reflex was a neurological symptom. He said "you have a normal Neurological exam". He looked over the EMG I had done 2 weeks before & did another one. He told me it was normal & I only had Carpal Tunnel syndrome. This, of course, had me think "Something was not normal" How come the 1st office didnt mention that to me? Could it be the ALS starting & it "LOOKS" like Carpal Tunnel Syndrom? Gosh! This is a crazy, sick way of thinking & the sad part is, I KNOW IT!
I dont know how or why & Im not even going to put myself thru the torture but when i asked him, if this could be the beginning of ALS & if I still have these symptoms in 6 mo's should I worry, He said no. He said, if I still have questionable thoughts of ALS in 1 week, I may want to consider a SSRI (Anti dep.) to help w/ compulsive thoughts. I'm assuming EVERYONE who walks in his office has a TUFF time walking out feeling reassured.
Why? Why is it so hard to accept this wonderful Information? Im still asking myself this.
For those of you who have been Dx'ed (AND I have spoken to SOME PRETTY DAM terrific People here) you gotta be thinking............What is wrong w/ thesee people!? Its like a sickness. I look at things differently now & my heart wishes I could do more! Its unfair.
I wish I could say, Its completely out of my mind but i'd be lying. I am trying to let it go though & remind myself that the DIRECTOR of ALS (Someone who sees this ALL DAY) told me, I dont have it. Its hard though when None of my symptoms are letting up.
I guess, im trying to pass the info hoping it may help someone else.
I pray for all of you. I pray for me & I can NEVER forget the support Ive gotten here!
I think & Wish real hard for a time to come where I will truly, completely have these thoughts out of my head.
I hope I'll find a reason for this widespread muscle pain, the cramps, twitching, ect in the meantime because I would be out of my mind to continue thinking its MND, RIGHT? :roll:
I started w/ widespread muscle pain, followed by twitches, Fatigue, and muscle cramping. Its been pretty continual for 6 weeks now. I dont get a break.
I've seen 2 nueros who both seem to think nothing of my brisk knee reflexes and absentee Babinski reflex (Which I know I had at some point).
I had an MRI Of Brain
MRI Of C-Spine
An EMG Upper & Lower
I even saw a Rhematologist who feels this cant be Fibromyalgia because I only had 1 trigger point. She said its more likely to be neurological & the symptoms just haven't manifested completely.
Well, I couldn't get this off my mind & I am embarrassed to say, Im still having difficulty but have to start somewhere.
I made an appointment at Beth Israel here in NYC w/ the Director of ALS. As soon as I started telling him my story.........he said, in a reassuring, not nasty way........."Doesnt sound like a typical ALS story". He checked me out. Thought nothing of my Brisk reflexes. (For those of you who mentioned, TWO brisk reflexes are not a concern) were right.
I was (& secretly still am) concerned about the absent Babinski. My feet do nothing. They used to. I didn't want to question & requestion everything he said, so I just asked if not having a Babinski reflex was a neurological symptom. He said "you have a normal Neurological exam". He looked over the EMG I had done 2 weeks before & did another one. He told me it was normal & I only had Carpal Tunnel syndrome. This, of course, had me think "Something was not normal" How come the 1st office didnt mention that to me? Could it be the ALS starting & it "LOOKS" like Carpal Tunnel Syndrom? Gosh! This is a crazy, sick way of thinking & the sad part is, I KNOW IT!
I dont know how or why & Im not even going to put myself thru the torture but when i asked him, if this could be the beginning of ALS & if I still have these symptoms in 6 mo's should I worry, He said no. He said, if I still have questionable thoughts of ALS in 1 week, I may want to consider a SSRI (Anti dep.) to help w/ compulsive thoughts. I'm assuming EVERYONE who walks in his office has a TUFF time walking out feeling reassured.
Why? Why is it so hard to accept this wonderful Information? Im still asking myself this.
For those of you who have been Dx'ed (AND I have spoken to SOME PRETTY DAM terrific People here) you gotta be thinking............What is wrong w/ thesee people!? Its like a sickness. I look at things differently now & my heart wishes I could do more! Its unfair.
I wish I could say, Its completely out of my mind but i'd be lying. I am trying to let it go though & remind myself that the DIRECTOR of ALS (Someone who sees this ALL DAY) told me, I dont have it. Its hard though when None of my symptoms are letting up.
I guess, im trying to pass the info hoping it may help someone else.
I pray for all of you. I pray for me & I can NEVER forget the support Ive gotten here!
I think & Wish real hard for a time to come where I will truly, completely have these thoughts out of my head.
I hope I'll find a reason for this widespread muscle pain, the cramps, twitching, ect in the meantime because I would be out of my mind to continue thinking its MND, RIGHT? :roll: