Riggz10
Active member
- Joined
- Apr 21, 2015
- Messages
- 31
- Reason
- Learn about ALS
- Country
- US
- State
- New York
- City
- Rockaway
So I have stayed away from here for awhile. I've glanced here and there but primarily have stayed away. The only thing that has kept me positive whatsoever are the responses I've gotten on here and the doctors telling me its not ALS. Every doctor that has told me no, I have left there happy and positive - but than a few days go by and as the weaknesses keep piling up - I get very nervous about my situation.
Just knowing how long it takes people to get diagnosed is always in the back of my mind. I hate to keep referencing other people - but it seems that so many people take awhile to be diagnosed. Took 2 years for Pat Quinn who is a year or two older than me. Lots of EMG's from NYC doctors (where they are supposed to be the best) - but nothing got confirmed for him until he went to Johns Hopkins to an official ALS clinic. Is that what I truly need to do? The neuromuscular doctor who I liked the most is officially stumped with me. He tells me no ALS and had me to go to a psychologist for therapy. But my weakness continues and I will outline them below as to where its the worst...
BREATHING/BULBAR ISSUES: I sleep at night and wake up numerous time to breathing complications. My mouth will be closed but myself and my fiance can hear this awful humming sound coming out my throat. I've read about this on here about being ALS-related so it's scary to say the least. I sit at my desk at work with bouts of not being able to breathe out of nowhere. I have been clearing my throat almost daily for over a year. My deep voice is cracked and strained for over a year. And the tripping over words continues.
HANDS/ARMS: The weakness in my right hand I'd say is the worst part of all of this. The more I try to say I don't have this disease - I get reminded of it every time I try and pick up a pen, tie my shoes, open the toothpaste cap, write my name, turn a nozzle, typing. My right index finger is starting to curl. All still possible as of today but so very weak and different from how I used to be. It just really feels that my right arm is just hanging there. My left hand even feels weak in the wrist area.
LEGS/FEET: I have spoken to you all about the constant pain/weakness I've had in my legs since basically the beginning of this. The pain isn't as bad on a daily basis but now I am having this incredibly heavy right foot. It feels so heavy compared to the left foot. I don't think I am dragging it but I wonder if that's around the corner? I take my shoes off and try and rotate my ankles in clock-wise motions and ky right ankle is so stiff compared to the other. All of the ALS-strength tests are getting more difficult. The walking on heels/toes/one-legged jumping/going up stairs backwards/squatting. How does a Division 1 athlete all of sudden lose his ability to run? Or do pullups? It's all gone.
TWITCHING: It's just getting worse and more often. Hands, wrists, calves, neck, back, calves, thighs, feet, and the worst in the upper arms. No tongue as of now I don't think.
I try to explain to my family that I am trying to believe the doctors. But I am just not getting better whatsoever. The symptoms just get worse and more scary. They ask how I feel. I always use the same analogy. I can pick up this desk and throw it across the room. But I have trouble picking up a pen or a quarter. Isn't that what ALS is? I know it could be a lot of things and I am speaking to my therapist about it. But it can't be anxiety anymore. The therapist doesn't think it is. Pete Frates - the incredible man who started the Ice Bucket Challenge said when he googled ALS out of nowhere and found the symptoms - that he had 10 of the 12 symptoms on the page. And it wasn't till then that he truly pushed his doctors to look into it. It's truly not a just an elderly person's disease. I feel like I truly am in the same boat. I have all the symptoms on the page also. What should I do?
I pray for all of you daily and I wanna know what you think I should do? I have been to numerous neuromuscular doctors but never to an ALS Clinic. Is that where I need to go to get this sorted out? Every EMG I've gotten took under 10 minutes. Aren't they supposed to way more thorough?
Please advise and let me know what you think of my continued symptoms. Thank you for reading and I look forward to your responses.
Just knowing how long it takes people to get diagnosed is always in the back of my mind. I hate to keep referencing other people - but it seems that so many people take awhile to be diagnosed. Took 2 years for Pat Quinn who is a year or two older than me. Lots of EMG's from NYC doctors (where they are supposed to be the best) - but nothing got confirmed for him until he went to Johns Hopkins to an official ALS clinic. Is that what I truly need to do? The neuromuscular doctor who I liked the most is officially stumped with me. He tells me no ALS and had me to go to a psychologist for therapy. But my weakness continues and I will outline them below as to where its the worst...
BREATHING/BULBAR ISSUES: I sleep at night and wake up numerous time to breathing complications. My mouth will be closed but myself and my fiance can hear this awful humming sound coming out my throat. I've read about this on here about being ALS-related so it's scary to say the least. I sit at my desk at work with bouts of not being able to breathe out of nowhere. I have been clearing my throat almost daily for over a year. My deep voice is cracked and strained for over a year. And the tripping over words continues.
HANDS/ARMS: The weakness in my right hand I'd say is the worst part of all of this. The more I try to say I don't have this disease - I get reminded of it every time I try and pick up a pen, tie my shoes, open the toothpaste cap, write my name, turn a nozzle, typing. My right index finger is starting to curl. All still possible as of today but so very weak and different from how I used to be. It just really feels that my right arm is just hanging there. My left hand even feels weak in the wrist area.
LEGS/FEET: I have spoken to you all about the constant pain/weakness I've had in my legs since basically the beginning of this. The pain isn't as bad on a daily basis but now I am having this incredibly heavy right foot. It feels so heavy compared to the left foot. I don't think I am dragging it but I wonder if that's around the corner? I take my shoes off and try and rotate my ankles in clock-wise motions and ky right ankle is so stiff compared to the other. All of the ALS-strength tests are getting more difficult. The walking on heels/toes/one-legged jumping/going up stairs backwards/squatting. How does a Division 1 athlete all of sudden lose his ability to run? Or do pullups? It's all gone.
TWITCHING: It's just getting worse and more often. Hands, wrists, calves, neck, back, calves, thighs, feet, and the worst in the upper arms. No tongue as of now I don't think.
I try to explain to my family that I am trying to believe the doctors. But I am just not getting better whatsoever. The symptoms just get worse and more scary. They ask how I feel. I always use the same analogy. I can pick up this desk and throw it across the room. But I have trouble picking up a pen or a quarter. Isn't that what ALS is? I know it could be a lot of things and I am speaking to my therapist about it. But it can't be anxiety anymore. The therapist doesn't think it is. Pete Frates - the incredible man who started the Ice Bucket Challenge said when he googled ALS out of nowhere and found the symptoms - that he had 10 of the 12 symptoms on the page. And it wasn't till then that he truly pushed his doctors to look into it. It's truly not a just an elderly person's disease. I feel like I truly am in the same boat. I have all the symptoms on the page also. What should I do?
I pray for all of you daily and I wanna know what you think I should do? I have been to numerous neuromuscular doctors but never to an ALS Clinic. Is that where I need to go to get this sorted out? Every EMG I've gotten took under 10 minutes. Aren't they supposed to way more thorough?
Please advise and let me know what you think of my continued symptoms. Thank you for reading and I look forward to your responses.