tphelps
Member
- Joined
- Jul 21, 2013
- Messages
- 10
- Reason
- Learn about ALS
- Country
- US
- State
- New York
- City
- New York
All,
I wanted to share my story and solicit some thoughts as it relates to ALS and I appreciate all of you not just those that have to time to indulge me, I can't imagine what you are going through.
I live in NYC, a 31 year old male. I have been difficult to diagnosis. Sometimes in February I was on the treadmill about a mile or so in and just felt very dizzy and off balance and had irregular breathing (I was at times very conscious of my breathing). I stopped working and went up stairs. Remained off balance / dizzy at times over the next month generally following some physical exertion and also mostly at night. I stopped working out and went to a few doctors (they did some blood work) and thought it was an inner ear infection. They gave me some antibiotics that did nothing and a steroid that worked (you would take it and an half hour or so later the symptoms would go away). After a month or so I was basically fine though still did an episode of balance / dizziness some nights here and there but I was working out three times a week and doing fine.
In June the symptoms came back, one day I was walking home and felt strong shortness of breath with a racing heartbeat some burning sensations and heavy heart palpitations. I went to the ER and several more physician friends - chest scan, more bloods, lung function test, brain MRI, echocardiogram, many ECGs on a holter. These symptoms certainly would come with a fair amount of fatigue - a sensations that all my limbs were heavy and sometimes very severe. At night there was tingling / shaking / vibrating in my torso and legs. Balance and intolerance for exercise has been tough and consciousness of breathing is pronounced with exertion. Reading the stickies I do not believe I have any clinical weakness but my right side - shoulder, hand, forearm, is perhaps a little bit heavier if you now what I mean. That right hand gets a little more tired than my left hand when talking on a cell phone for example. The fasciculations started last week and that's pretty much why I am hear. They are mostly on my right wrist / foreman (the one that a little bit weaker but not clinically weak) but they are all over my body - other arm, chest, both legs, ankles. They come when I am resting. With a clean I am just confused and scared. Still get the dizziness if I try and walk around and still have the vibrating / tingling / whatever legs at night. With an EMG this week I should know more but wanted to see if you had any thoughts.
I wanted to share my story and solicit some thoughts as it relates to ALS and I appreciate all of you not just those that have to time to indulge me, I can't imagine what you are going through.
I live in NYC, a 31 year old male. I have been difficult to diagnosis. Sometimes in February I was on the treadmill about a mile or so in and just felt very dizzy and off balance and had irregular breathing (I was at times very conscious of my breathing). I stopped working and went up stairs. Remained off balance / dizzy at times over the next month generally following some physical exertion and also mostly at night. I stopped working out and went to a few doctors (they did some blood work) and thought it was an inner ear infection. They gave me some antibiotics that did nothing and a steroid that worked (you would take it and an half hour or so later the symptoms would go away). After a month or so I was basically fine though still did an episode of balance / dizziness some nights here and there but I was working out three times a week and doing fine.
In June the symptoms came back, one day I was walking home and felt strong shortness of breath with a racing heartbeat some burning sensations and heavy heart palpitations. I went to the ER and several more physician friends - chest scan, more bloods, lung function test, brain MRI, echocardiogram, many ECGs on a holter. These symptoms certainly would come with a fair amount of fatigue - a sensations that all my limbs were heavy and sometimes very severe. At night there was tingling / shaking / vibrating in my torso and legs. Balance and intolerance for exercise has been tough and consciousness of breathing is pronounced with exertion. Reading the stickies I do not believe I have any clinical weakness but my right side - shoulder, hand, forearm, is perhaps a little bit heavier if you now what I mean. That right hand gets a little more tired than my left hand when talking on a cell phone for example. The fasciculations started last week and that's pretty much why I am hear. They are mostly on my right wrist / foreman (the one that a little bit weaker but not clinically weak) but they are all over my body - other arm, chest, both legs, ankles. They come when I am resting. With a clean I am just confused and scared. Still get the dizziness if I try and walk around and still have the vibrating / tingling / whatever legs at night. With an EMG this week I should know more but wanted to see if you had any thoughts.
