Sprawl
Active member
- Joined
- Dec 5, 2015
- Messages
- 35
- Reason
- PALS
- Diagnosis
- 01/2016
- Country
- US
- State
- ND
- City
- Burlington
**Sorry for the length, I didn't realize how long it got until I hit preview.**
I have read thru the sticky's and know that what I am experiencing is likely something different, and I really hope I am in the wrong place. I have been reading posts for the last week and finally got up the courage to put my story on here and see what you all think...
First a little background, I am a 37 year old male. Married with 2 kids ( 7&8 ). US Navy veteran ('97-'05). I have had only a few previous health issues (GERD, Ulcers).
A little less than a year ago I began experiencing minor issues with my right hand. I spend a lot of time working on the computer so I believed it to simply be over use. 6 months later it was still there and seemed to be getting worse even though I had eliminated most of my computer time. So I finally went to see my PCP and he had me do some test for carpal tunnel by putting the backs of my hands together and after 30 secs asked if I had any numbness or tingling. I did feel a slight tingling so he said I had carpal tunnel and sent me to physical therapy and had me wear a brace at night. When I went to physical therapy the did a grip test and on my left hand I believe she said I hit 110 but on my right hand was 40 (I am right handed btw). This is significant to me because my right hand was always the strongest. So anyways, I continue with the PT and after about 2months and no positive progress she referred me back to PCP for a Cortizone injection. I received the injection and waited about a full 2 months cause I had read somewhere that sometimes injections can take that long to take effect. After not seeing any results I returned and I was scheduled for a consult for surgery. The Dr. came in shook my hand, immediately turned it over and looked at it closely. Asked me a few questions, had me remove my shirt and then said he needed to make a call because the muscles in my right arm have atrophied(not sure if that is correct spelling), that he needed to get me over to neurology immediately. He made the phone call there in the office and off I was escorted to neurology. The neurologist did several exams and I will do my best to remember all he said, but this was an unnerving event since I thought I was just going to have a consult for carpal tunnel surgery.
He did a test that I do not recall what it is called but it felt similar to a tens unit, this is the one test that I did not understand if he got any results from. He did some physical tests with pins and the handle to something on my feet, asked me if I could tell which way he was bending my foot or toes. Everything seemed like it was ok there. Then he conducted an EMG, and his words for the results were that "my muscles were chattering when they were supposed to be relaxed". He also did a reflex test and said my reflexes are pretty strong, which I said good, he then told me no, that is not good, they are too strong. He also said my legs were too stiff, and asked if I had trouble walking, I said no. So he scheduled me for an MRI of my C & T spine and brain so he could see if there was a nerve being pinched in my spine or if I had a bulging disk that could be causing this. So I came back 2 weeks later after I had gotten in for an MRI and he reviewed the MRI with me. There was nothing abnormal in the MRI. he then had me lay down and ran through some of the same tests he had conducted the last time with the same results, including another EMG which he said had even more chatter this time. It was at this point he kept asking if I had any trouble walking, breathing or swallowing. I bet he asked each one about 7-8 times over the course of the visit.
At the end of this last visit he sat me down in the chair after the exam and told my wife and I that what is going on is beyond my expertise and then when we asked him if he could tell us any inclination as to what it could be, he named off several things but kind of discounted each one as he went, the only ones I remember clearly was MS, Viral infection, B12 deficiency and there was several others he named but each one he had kind of a counter argument as to why he thinks it couldn't be that. Then at the end of it all he told us that most signs point to a motor neuron disease. I had no idea what that meant at the time but after the wife came home and did some research, I do now! I am kind of freaked out.
Before we left the office that day (last Friday) the Neurologist ordered some blood work and an xray, and put in a referral to Mayo in Rochester, MN. He said he hopes that we can get some results from the labs and xray and we can cancel the Mayo appt. As of now all but 1-2 of the lab results are back and normal. My Mayo appt is scheduled for 1-26-16.
During all this time my hand has been getting worse and worse. What started with what seemed to be simple difficulty typing to now I can type normal with my left hand but have to hunt and peck with my right because my fingers just kind of go all over the place when I try, I can no longer write with a pen and paper, cannot button my own jeans or tie my shoes. My right hand has virtually no muscle mass left and the forearm and upper arms are diminishing quickly. My wife has mad comments that she can see my tricep twitching recently. And probably completely unrelated, but with recent temperatures I get what I can best describe as a shiver in my lower body when exposed to cold (most pronounced in the glutes) even at temperatures that are not what I really feel cold.
Any info or feedback would be appreciated.
I have read thru the sticky's and know that what I am experiencing is likely something different, and I really hope I am in the wrong place. I have been reading posts for the last week and finally got up the courage to put my story on here and see what you all think...
First a little background, I am a 37 year old male. Married with 2 kids ( 7&8 ). US Navy veteran ('97-'05). I have had only a few previous health issues (GERD, Ulcers).
A little less than a year ago I began experiencing minor issues with my right hand. I spend a lot of time working on the computer so I believed it to simply be over use. 6 months later it was still there and seemed to be getting worse even though I had eliminated most of my computer time. So I finally went to see my PCP and he had me do some test for carpal tunnel by putting the backs of my hands together and after 30 secs asked if I had any numbness or tingling. I did feel a slight tingling so he said I had carpal tunnel and sent me to physical therapy and had me wear a brace at night. When I went to physical therapy the did a grip test and on my left hand I believe she said I hit 110 but on my right hand was 40 (I am right handed btw). This is significant to me because my right hand was always the strongest. So anyways, I continue with the PT and after about 2months and no positive progress she referred me back to PCP for a Cortizone injection. I received the injection and waited about a full 2 months cause I had read somewhere that sometimes injections can take that long to take effect. After not seeing any results I returned and I was scheduled for a consult for surgery. The Dr. came in shook my hand, immediately turned it over and looked at it closely. Asked me a few questions, had me remove my shirt and then said he needed to make a call because the muscles in my right arm have atrophied(not sure if that is correct spelling), that he needed to get me over to neurology immediately. He made the phone call there in the office and off I was escorted to neurology. The neurologist did several exams and I will do my best to remember all he said, but this was an unnerving event since I thought I was just going to have a consult for carpal tunnel surgery.
He did a test that I do not recall what it is called but it felt similar to a tens unit, this is the one test that I did not understand if he got any results from. He did some physical tests with pins and the handle to something on my feet, asked me if I could tell which way he was bending my foot or toes. Everything seemed like it was ok there. Then he conducted an EMG, and his words for the results were that "my muscles were chattering when they were supposed to be relaxed". He also did a reflex test and said my reflexes are pretty strong, which I said good, he then told me no, that is not good, they are too strong. He also said my legs were too stiff, and asked if I had trouble walking, I said no. So he scheduled me for an MRI of my C & T spine and brain so he could see if there was a nerve being pinched in my spine or if I had a bulging disk that could be causing this. So I came back 2 weeks later after I had gotten in for an MRI and he reviewed the MRI with me. There was nothing abnormal in the MRI. he then had me lay down and ran through some of the same tests he had conducted the last time with the same results, including another EMG which he said had even more chatter this time. It was at this point he kept asking if I had any trouble walking, breathing or swallowing. I bet he asked each one about 7-8 times over the course of the visit.
At the end of this last visit he sat me down in the chair after the exam and told my wife and I that what is going on is beyond my expertise and then when we asked him if he could tell us any inclination as to what it could be, he named off several things but kind of discounted each one as he went, the only ones I remember clearly was MS, Viral infection, B12 deficiency and there was several others he named but each one he had kind of a counter argument as to why he thinks it couldn't be that. Then at the end of it all he told us that most signs point to a motor neuron disease. I had no idea what that meant at the time but after the wife came home and did some research, I do now! I am kind of freaked out.
Before we left the office that day (last Friday) the Neurologist ordered some blood work and an xray, and put in a referral to Mayo in Rochester, MN. He said he hopes that we can get some results from the labs and xray and we can cancel the Mayo appt. As of now all but 1-2 of the lab results are back and normal. My Mayo appt is scheduled for 1-26-16.
During all this time my hand has been getting worse and worse. What started with what seemed to be simple difficulty typing to now I can type normal with my left hand but have to hunt and peck with my right because my fingers just kind of go all over the place when I try, I can no longer write with a pen and paper, cannot button my own jeans or tie my shoes. My right hand has virtually no muscle mass left and the forearm and upper arms are diminishing quickly. My wife has mad comments that she can see my tricep twitching recently. And probably completely unrelated, but with recent temperatures I get what I can best describe as a shiver in my lower body when exposed to cold (most pronounced in the glutes) even at temperatures that are not what I really feel cold.
Any info or feedback would be appreciated.
