mcwtlg
Active member
- Joined
- Dec 24, 2014
- Messages
- 30
- Reason
- PALS
- Diagnosis
- 02/2015
- Country
- US
- State
- TX
- City
- Allen
Hi all. I discovered this forum while looking online for conditions that could imitate ALS. My current neuro thinks I may have ALS but wants me to seek a second opinion at a top center in Texas. At this point I do not know what to think. Obviously I hope my neuro is wrong.
I am a 49 y/o male who is in fairly good shape (running 3 days a week from 3-10 miles each time).
Early 2014 went to my GP for my yearly physical and while there I mentioned to him that I had noticed a loss of grip/pinch strength and coordination in my non-dominant left hand (I had some cramping and minor muscle twitching but did not mention it at that time). My GP ran me through a battery of physical tests and after some time said he wanted me to see a neurologist. He had three in the area he liked so I picked one, who amazingly enough could see me within the week.
I went to see the neurologist and gave him my symptoms and after a small battery of physical tests, he said the though it was carpal tunnel. I was a little skeptical since it was in my non-dominant hand and since I had absolutely no numbness or tingling but I am not a doctor so I let him do his job. He asked if I wanted him to perform an EMG to confirm the CTS and I agreed. He did the test on my left arm and then my right (no trouble in my right so I guess it was the "control") and when he was done he said that I had moderate CTS in my left wrist and mild in my right and ordered me to wear a wrist brace for 60-90 days. I did this religiously for the allotted time, only removing the brace when I bathed, washed dishes, or went running. So all in all I wore it 18-20 hours a day, including when I slept (supposedly that is when most people do the most damage to their wrists).
I went back after 90 days and the neurologist asked me how my wrist was and I told him that it felt worse, weaker...maybe from not being able to use it in the brace. He ran the physical tests again (adding one or two more) and said he could not really see any difference between my two arms/hands in strength. He was still very sure that it was carpel but if I wanted he could run some blood tests and an schedule an MRI on my neck just to rule out some things. So I agreed. I continued to wear the brace but only at night. No improvement.
After the test results came back my neurologist called me into his office to discuss the results: No pinched nerve in my neck and the blood test came back normal except for a slightly elevated muscle enzyme, which he said could mean anything.
It was on this visit that he noticed the muscles in my left arm twitching and asked me how long that had been going on. I told him that it had been going on for a few months but I never thought much of it. He then asked me if I had any cramping and I told him yes, but I just though maybe it was an electrolyte issue or running related. He did his battery of physical tests again and made a face. He seemed very concerned at this point and asked me if I would consent to an open (not needle) muscle biopsy (that was fun...not).
Long story, made short I had that done and got the results back and the pathology was inconclusive but it did state that there was "moderate active denervation atrophy". On my follow-up visit, my neurologist said that he was more concerned now (where when I first came in he thought I just had CTS) and wanted me to get a second opinion as he believes I may have ALS. He looked at my face and asked me to position my tongue in various ways and he stated he can see issues there as well. Again he ran his battery of tests and said he could now clearly see a big difference between my right and left hand/arm in strength (of course I notice the coordination/manual dexterity the most)
He has ordered more blood tests but since the lab he uses is out of network for my insurance I am going to have my GP (I have my yearly coming up next month) order them from his lab (in network) and send them to my neurologist.
Over the past 10 months or so I have gone from having some difficulty using my left hand to open things to at times not being able to use it at all. Zipper food storage bags are a real pain to open and close, as is buttoning my jeans or using my left hand to button the right sleeve of a dress shirt (I actually cannot do this so I have my wife do that one). When you look at my hands, the left hand has a lot less muscle mass, especially between the thumb and the index finger.
I am still very active (walking/hiking/biking/geocaching) and I still run (I competed in my first Half Marathon in October 2014) but I now notice that during a run my legs feel heavy and I am not getting my feet as high off the ground as I used to. This morning I actually tripped and fell for the first time.
The twitching has spread to my chest and right arm and some in my legs. Cramps appear out of nowhere in my hands and oddly enough, my diaphragm. My left hand is still the major problem with the cramps turning it into a claw at the drop of a hat. Typing can be a problem.
My Symptoms:
Loss of grip/pinch strength in left hand (initial complaint). This has gotten much worse over the past 9 months.
Atrophy in left hand/arm -
Fasciculations (left arm/hand, right arm/hand, chest, diaphragm)
Sporadic, Intense cramping of hands, feet, arms, diaphragm
I have to admit that in the beginning I feared the worst in thinking I had ALS (my mom's best friend died a couple of years ago from ALS...it advanced very rapidly for her) but after reading all the stories on this forum I am not sure anymore. I am beginning to wonder if I have a couple of things going on...maybe BFS and something else?
The other thing that I am still confused about is the EMG. I had one on my first visit to the neurologist (early 2014) and he said I had carpal...could he have misread those results or could it be carpal and BFS or something else entirely?
About 4 years ago I was diagnosed with low vitamin D and put on 3000 IU per day which helped my foot cramps a lot at that time (I did not have any of the other symptoms I have today). I have nor have I ever had any other deficiencies that I have been made aware of. I go get a physical every year. As a matter of fact, my GP says I am one f his healthiest patients (in regards to BMI, BP, weight, cholesterol, etc).
I go see "one of the best" neuros in the state (UT Southwestern) in February. He specializes in ALS. I hope he can give me some solid info.
Well, that is my story to date.
I am a 49 y/o male who is in fairly good shape (running 3 days a week from 3-10 miles each time).
Early 2014 went to my GP for my yearly physical and while there I mentioned to him that I had noticed a loss of grip/pinch strength and coordination in my non-dominant left hand (I had some cramping and minor muscle twitching but did not mention it at that time). My GP ran me through a battery of physical tests and after some time said he wanted me to see a neurologist. He had three in the area he liked so I picked one, who amazingly enough could see me within the week.
I went to see the neurologist and gave him my symptoms and after a small battery of physical tests, he said the though it was carpal tunnel. I was a little skeptical since it was in my non-dominant hand and since I had absolutely no numbness or tingling but I am not a doctor so I let him do his job. He asked if I wanted him to perform an EMG to confirm the CTS and I agreed. He did the test on my left arm and then my right (no trouble in my right so I guess it was the "control") and when he was done he said that I had moderate CTS in my left wrist and mild in my right and ordered me to wear a wrist brace for 60-90 days. I did this religiously for the allotted time, only removing the brace when I bathed, washed dishes, or went running. So all in all I wore it 18-20 hours a day, including when I slept (supposedly that is when most people do the most damage to their wrists).
I went back after 90 days and the neurologist asked me how my wrist was and I told him that it felt worse, weaker...maybe from not being able to use it in the brace. He ran the physical tests again (adding one or two more) and said he could not really see any difference between my two arms/hands in strength. He was still very sure that it was carpel but if I wanted he could run some blood tests and an schedule an MRI on my neck just to rule out some things. So I agreed. I continued to wear the brace but only at night. No improvement.
After the test results came back my neurologist called me into his office to discuss the results: No pinched nerve in my neck and the blood test came back normal except for a slightly elevated muscle enzyme, which he said could mean anything.
It was on this visit that he noticed the muscles in my left arm twitching and asked me how long that had been going on. I told him that it had been going on for a few months but I never thought much of it. He then asked me if I had any cramping and I told him yes, but I just though maybe it was an electrolyte issue or running related. He did his battery of physical tests again and made a face. He seemed very concerned at this point and asked me if I would consent to an open (not needle) muscle biopsy (that was fun...not).
Long story, made short I had that done and got the results back and the pathology was inconclusive but it did state that there was "moderate active denervation atrophy". On my follow-up visit, my neurologist said that he was more concerned now (where when I first came in he thought I just had CTS) and wanted me to get a second opinion as he believes I may have ALS. He looked at my face and asked me to position my tongue in various ways and he stated he can see issues there as well. Again he ran his battery of tests and said he could now clearly see a big difference between my right and left hand/arm in strength (of course I notice the coordination/manual dexterity the most)
He has ordered more blood tests but since the lab he uses is out of network for my insurance I am going to have my GP (I have my yearly coming up next month) order them from his lab (in network) and send them to my neurologist.
Over the past 10 months or so I have gone from having some difficulty using my left hand to open things to at times not being able to use it at all. Zipper food storage bags are a real pain to open and close, as is buttoning my jeans or using my left hand to button the right sleeve of a dress shirt (I actually cannot do this so I have my wife do that one). When you look at my hands, the left hand has a lot less muscle mass, especially between the thumb and the index finger.
I am still very active (walking/hiking/biking/geocaching) and I still run (I competed in my first Half Marathon in October 2014) but I now notice that during a run my legs feel heavy and I am not getting my feet as high off the ground as I used to. This morning I actually tripped and fell for the first time.
The twitching has spread to my chest and right arm and some in my legs. Cramps appear out of nowhere in my hands and oddly enough, my diaphragm. My left hand is still the major problem with the cramps turning it into a claw at the drop of a hat. Typing can be a problem.
My Symptoms:
Loss of grip/pinch strength in left hand (initial complaint). This has gotten much worse over the past 9 months.
Atrophy in left hand/arm -
Fasciculations (left arm/hand, right arm/hand, chest, diaphragm)
Sporadic, Intense cramping of hands, feet, arms, diaphragm
I have to admit that in the beginning I feared the worst in thinking I had ALS (my mom's best friend died a couple of years ago from ALS...it advanced very rapidly for her) but after reading all the stories on this forum I am not sure anymore. I am beginning to wonder if I have a couple of things going on...maybe BFS and something else?
The other thing that I am still confused about is the EMG. I had one on my first visit to the neurologist (early 2014) and he said I had carpal...could he have misread those results or could it be carpal and BFS or something else entirely?
About 4 years ago I was diagnosed with low vitamin D and put on 3000 IU per day which helped my foot cramps a lot at that time (I did not have any of the other symptoms I have today). I have nor have I ever had any other deficiencies that I have been made aware of. I go get a physical every year. As a matter of fact, my GP says I am one f his healthiest patients (in regards to BMI, BP, weight, cholesterol, etc).
I go see "one of the best" neuros in the state (UT Southwestern) in February. He specializes in ALS. I hope he can give me some solid info.
Well, that is my story to date.
) I was doubtful of that in the beginning simply because I know about five people who have or have had it and all their symptoms are the same and of course that would not explain the intense cramping and twitching, but I wanted to give the neuro the benefit of the doubt and let him do the analysis. I am trying to be as methodical and rational as I can. I see no benefit of acting on emotion. I am a man of facts...or at least I try to be.
