Riggz10
Active member
- Joined
- Apr 21, 2015
- Messages
- 31
- Reason
- Learn about ALS
- Country
- US
- State
- New York
- City
- Rockaway
I tried taking your advice. And I did for awhile. Stayed off the site and lived my life. I got engaged to my beautiful gf who has been my side through this whole ordeal since last March. Through all of the doctors visits, to looking at my twitches all over my body, to being there when my EMG's were "clean" (or whatever that means).
I am back because I have something to say. The PALS and CALS help so much and I truly value your opinions, but when you tell someone that "No way you have ALS, no chance, you gotta move on" - and then they come back and say they have been diagnosed - does that change your thought process at all?
A good friend of mine went to college with Pat Quinn - one of the founders of the Ice Bucket Challenge. This guy (God Bless Him) had 5 EMG's and was told he "Fine" by what they say are the best doctors in the world in NYC. Had to go all the way to Johns Hopkins to get diagnoses with ALS. They just kept telling him he was fine because he was young. Obviously he wasn't. He said he knew all along he had it. Once he lost his hands he knew. Even if the machine couldn't "find it".
So I sit here as a 31 year old and just read a guy named Corwin's threads from the past. Everyone told him no on this site and now it looks like he has it. 5 EMG's all clear and now he has it. This just always brings me back to square one again.
I can barely type because my right hand is so weak. I continually have to use the backspace button b/c my fingers aren't cooperating. My wrist is weakening as my right arm feels like its hanging to the floor. My writing is a disgrace. I work behind a desk so every time I pick up a pen or an envelope opener I have to contort my hand a certain way just so I can do it. My left hand is catching up as those fingers are losing strength. My legs have had the stiffness, achy, crampy feelings since about last April. I cannot run. My feet have felt like bricks My feet all the way up to my legs and up to my arms and down my hands is twitching like crazy. The left side of my left hand is the new popular spot for twitching. Right below my pinky all the way down to wrist twitches all the time. And I keep reading people tell DIHALS that if you twitch with no weakness you are fine. But when you are twitching with weakness - then there is an issue. Well I've had this issue for way too long now. My breathing is brutal - my sleep test came and gone with Pulmo stating she wants me to do another with a Bipap - which from what I read is what PALS use for their breathing? I wake up in middle of night 5 or more so times daily - just can't sleep through the night. Wake up gasping for air. I know this isn't normal. I get food stuck in throat all the time, clear my throat all the time, and can not speak without slurring. Scratchy, hoarse voice. Of course I'm the only one that hears it so far, but I feel it every time I speak. I feel like I'm not too far away from this being noticeable to everyone I speak to.
I am petrified to say the least. Symptoms in hands, legs, breathing, and speaking. I feel that's every major category. Every time I try to believe a doctor and all of you, I just think about Pat Quinn who is young like me or someone like Corwin who has had 5 EMG's. I've been lurking here for months trying to read that my symptoms are different from the PALS but I just feel like I know something is wrong. I have had no improvement in over a year and I read how long these diagnoses take - my neuro who I liked recently told me "I might be in for a long diagnostic process" - whatever that means. Same guy who told me my clinical and EMG were superb in September. I guess you never really know with these tests. He keeps holding off an another EMG because he wants to see if anything changes. Told me and my gf that these tests change - but everything on this site seems to say that this test would show months in advance. Well it's been a year and the waiting continues...
Sorry for the long write-up but would value anyone's input...Thank you - you all remain in my prayers!!!
I am back because I have something to say. The PALS and CALS help so much and I truly value your opinions, but when you tell someone that "No way you have ALS, no chance, you gotta move on" - and then they come back and say they have been diagnosed - does that change your thought process at all?
A good friend of mine went to college with Pat Quinn - one of the founders of the Ice Bucket Challenge. This guy (God Bless Him) had 5 EMG's and was told he "Fine" by what they say are the best doctors in the world in NYC. Had to go all the way to Johns Hopkins to get diagnoses with ALS. They just kept telling him he was fine because he was young. Obviously he wasn't. He said he knew all along he had it. Once he lost his hands he knew. Even if the machine couldn't "find it".
So I sit here as a 31 year old and just read a guy named Corwin's threads from the past. Everyone told him no on this site and now it looks like he has it. 5 EMG's all clear and now he has it. This just always brings me back to square one again.
I can barely type because my right hand is so weak. I continually have to use the backspace button b/c my fingers aren't cooperating. My wrist is weakening as my right arm feels like its hanging to the floor. My writing is a disgrace. I work behind a desk so every time I pick up a pen or an envelope opener I have to contort my hand a certain way just so I can do it. My left hand is catching up as those fingers are losing strength. My legs have had the stiffness, achy, crampy feelings since about last April. I cannot run. My feet have felt like bricks My feet all the way up to my legs and up to my arms and down my hands is twitching like crazy. The left side of my left hand is the new popular spot for twitching. Right below my pinky all the way down to wrist twitches all the time. And I keep reading people tell DIHALS that if you twitch with no weakness you are fine. But when you are twitching with weakness - then there is an issue. Well I've had this issue for way too long now. My breathing is brutal - my sleep test came and gone with Pulmo stating she wants me to do another with a Bipap - which from what I read is what PALS use for their breathing? I wake up in middle of night 5 or more so times daily - just can't sleep through the night. Wake up gasping for air. I know this isn't normal. I get food stuck in throat all the time, clear my throat all the time, and can not speak without slurring. Scratchy, hoarse voice. Of course I'm the only one that hears it so far, but I feel it every time I speak. I feel like I'm not too far away from this being noticeable to everyone I speak to.
I am petrified to say the least. Symptoms in hands, legs, breathing, and speaking. I feel that's every major category. Every time I try to believe a doctor and all of you, I just think about Pat Quinn who is young like me or someone like Corwin who has had 5 EMG's. I've been lurking here for months trying to read that my symptoms are different from the PALS but I just feel like I know something is wrong. I have had no improvement in over a year and I read how long these diagnoses take - my neuro who I liked recently told me "I might be in for a long diagnostic process" - whatever that means. Same guy who told me my clinical and EMG were superb in September. I guess you never really know with these tests. He keeps holding off an another EMG because he wants to see if anything changes. Told me and my gf that these tests change - but everything on this site seems to say that this test would show months in advance. Well it's been a year and the waiting continues...
Sorry for the long write-up but would value anyone's input...Thank you - you all remain in my prayers!!!