harmonyboy74
New member
- Joined
- Oct 22, 2012
- Messages
- 8
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- VA
- City
- Gloucester
Hello,
I’ve been visiting the forums for the last few months but this is my first post. I’m a 38 year old man and in March of this year I started having some symptoms that mostly included dizziness, tingling, weakness in my neck that would come and go, and what felt like mild heart palpitations. I had a friend who was diagnosed with MS around then and I figured I was just having sympathetic symptoms so I went to my GP and had a physical. They ran all kinds of bloodwork including tests for Lyme, thyroid issues etc, and when all of that came back normal my doctor referred me to a cardiologist to have my heart checked out. I had an ultrasound of my heart, and a stress test where I ran on the treadmill hooked up to all kinds of heart monitors. All of that was normal and my GP ordered an MRI of the brain just to rule out MS. The MRI came back normal and my doctor said he believed my problems were anxiety related. I’d had some very stressful changes at work early this year and I agreed to take 10mg of Celexa once a day. He also referred me to a neurologist to do a Neuro exam and review my MRI. This appointment was a couple months away since everything seemed normal so I started working to overcome this supposed anxiety. The dizziness and tingling slowly faded away and my neck was not really an issue. It just seemed tired once in a while. Then in June I noticed that my legs were feeling a little awkward when I walked. I initially didn’t think much of this until one day I noticed I was having some foot cramps, and what seemed like a hand cramp. My left hand felt a little clumsy and I had to concentrate to button my shirt and floss my teeth. I consulted Dr. Google thinking I would find something about potassium or dehydration that was causing muscle cramps and then by chance I stumbled across something about ALS. I didn’t know what ALS was but when I read what the early symptoms were it was enough to send me running to the bathroom to vomit. They seemed to fit what I was experiencing to a tee. I then spent the next few days convincing myself that I didn’t have ALS and doing every self test I could think of to back up that theory.
In March I had been playing tennis a few times a week and running 3 miles every other day. I began to notice that I was having a harder and harder time finish my runs because I felt winded. By June I had stopped running altogether because I just felt so out of breath every time I ran. Part of me figured this was due to the heat. I live in Southeast Virginia on the middle peninsula and by the time we get to June we have 90 and 100 degree temps sometimes. I’m a singer and I also noticed that my voice was weaker and hoarse in the high end of my range. In July I began to notice that my forearms were shrinking. My watch which has a sized metal band began to slide up and down my arm when it once had been a great fit. I also noticed that my calves which were once defined began to shrink as well. I figured I had stopped running so that was probably the cause. By the time I saw the Neurologist in July I was having muscle twitching in my arms and legs. She completed a full hour long work up and exam which examined my history, my recent MRI, tested my reflexes, dexterity, and muscle strength. I told her I was concerned about ALS and she told me that she didn’t see anything that looked like that to her at all. She suspected a pinched nerve and ordered some x-rays of my neck. She also scheduled me for an EMG to put my mind at ease. When the x-rays of my neck came back normal I felt sure that the EMG would show problems and that I’d then start the process of confirming diagnosis with a second neurologist and learning to live with ALS. On EMG test day they completed the nerve conductivity part of the test on my left arm and leg, and then came back to do my right arm. The doctor told me that was because she hadn’t seen numbers that good all week and wanted to compare the left to the right. They then completed the needle part of the test on my right side working from my shoulder down to my arm and leg to my ankle. At the end of the test she said it was as she’d expected. No ALS. Needless to say I was relieved. I asked her what could be causing my issues and she said anxiety. I agreed to let her increase my dose to 20mg a day of Celexa and took my mother who’d accompanied me to the test out to lunch. I again set my mind to overcoming anxiety.
Throughout the rest of July not much changed. I took a couple trips, played golf and was actually playing better than I’d played in years. At the beginning of August my neck began to feel weak again though, worse this time and constant, my head felt like it weighed 200 pounds. This weakness was not also accompanied by muscle twitching in the back of my neck. This went on for about two weeks. Then I went on a vacation with my family for ten days and by the end of that trip my neck felt better and actually hasn’t given me any other problems since. I did however begin to have some difficulty swallowing then. No choking or anything too serious but enough for me to be conscious of it. My hands also continued to feel awkward and clumsy but that too isn’t really noticeable unless I’m handling small objects. My typing doesn’t seem to be affected, and I can still play piano and guitar with no trouble. At the end of August I saw my neurologist again for a follow up and she completed the standard exam. I told her about my swallowing difficulties and shortness of breath, as well as my continued clumsiness in my hands. She was not concerned however and scheduled another follow up for the end of December. She did however refer me to the Neurology department at the University of Virginia just to ease my mind and I got an appointment for the beginning of October. Between the time I saw my regular Neurologist and my appointment at UVA I started feeling short of breath more often. Even when playing golf I felt like I needed to rest and recover after every swing. I called my regular Neurologist and she was out of the country. I did however get a call back from one of the other doctors at the office and he scheduled me for more blood work and made an appointment for me to have some breathing tests with a pulmonologist. The breathing tests did show some problems but the doctor said the results showed they were issues of obstruction possibly due to my formerly being a smoker. I quit in 2011. He also said that the results were not consistent with breathing issues seen in neurodegenerative diseases, and he scheduled more tests. I went in for a lung scan to see if I had a pulmonary embolism, and a metacholine challenge to see if I had asthma. Both of these tests were normal but the pulmonologist prescribed me a once a day inhaler of Spiriva to hopefully help overcome the obstruction and breathing difficulty.
October finally came and my symptoms had progressed to more twitching in my arms, legs, torso, eyelids, and muscle shrinking in my arms and legs. I finally went to my appointment at UVA and had another full Neuro exam. I then had another EMG which they completed again on my right side. This time they warmed up my hands and feet in big soaking tanks before the test. At the end the attending Neurologist came in, repeated the Neuro exam and told me that they don’t see any sign of anything unhealthy in the tests or EMG. No ALS. He said that they diagnose ALS about once a week in the neurology department there and that the EMG would definitely detect any abnormalities even before there were symptoms. Since I’ve definitely had my symptoms quite a while I felt relieved again. I asked him what he thought could be causing my muscle shrinking and he recommended I begin exercising again, saying that perhaps I overreacted to my symptoms and stopped my regular routine which might explain my loss of muscle. I left and took my poor worried mother to dinner this time and tried to process all of this. While I certainly appreciate the relief of the good news, I still have no explanation for the muscle loss. I hadn’t been lifting weights to keep my arms in shape and now I can easily put my index finger on my other hand in between my wrist and my watch band. My legs are also thinner, and I’m having more trouble swallowing again. I’ve not lost weight but I’m pretty sure it’s because I’m offsetting it in the middle. I’m now currently carrying a bit of a belly I’ve never had before. I’m 6’3’’ and have maintained around 195 pounds. I also noticed this week that when I hold my teeth close together I can feel a slight chattering. My hands are getting thinner, clumsier lately, I’m constantly out of breath and feel weaker all the time but still have no answers at all. I can still run and throw in the yard with my nephews but I’m immediately winded. I’m sure this is not a unique story here but I’d love any insight or ideas anyone might have. Thank you all so much for taking the time to read this! I didn’t intend for it to be so long but looking back it’s been a long year so far…
I’ve been visiting the forums for the last few months but this is my first post. I’m a 38 year old man and in March of this year I started having some symptoms that mostly included dizziness, tingling, weakness in my neck that would come and go, and what felt like mild heart palpitations. I had a friend who was diagnosed with MS around then and I figured I was just having sympathetic symptoms so I went to my GP and had a physical. They ran all kinds of bloodwork including tests for Lyme, thyroid issues etc, and when all of that came back normal my doctor referred me to a cardiologist to have my heart checked out. I had an ultrasound of my heart, and a stress test where I ran on the treadmill hooked up to all kinds of heart monitors. All of that was normal and my GP ordered an MRI of the brain just to rule out MS. The MRI came back normal and my doctor said he believed my problems were anxiety related. I’d had some very stressful changes at work early this year and I agreed to take 10mg of Celexa once a day. He also referred me to a neurologist to do a Neuro exam and review my MRI. This appointment was a couple months away since everything seemed normal so I started working to overcome this supposed anxiety. The dizziness and tingling slowly faded away and my neck was not really an issue. It just seemed tired once in a while. Then in June I noticed that my legs were feeling a little awkward when I walked. I initially didn’t think much of this until one day I noticed I was having some foot cramps, and what seemed like a hand cramp. My left hand felt a little clumsy and I had to concentrate to button my shirt and floss my teeth. I consulted Dr. Google thinking I would find something about potassium or dehydration that was causing muscle cramps and then by chance I stumbled across something about ALS. I didn’t know what ALS was but when I read what the early symptoms were it was enough to send me running to the bathroom to vomit. They seemed to fit what I was experiencing to a tee. I then spent the next few days convincing myself that I didn’t have ALS and doing every self test I could think of to back up that theory.
In March I had been playing tennis a few times a week and running 3 miles every other day. I began to notice that I was having a harder and harder time finish my runs because I felt winded. By June I had stopped running altogether because I just felt so out of breath every time I ran. Part of me figured this was due to the heat. I live in Southeast Virginia on the middle peninsula and by the time we get to June we have 90 and 100 degree temps sometimes. I’m a singer and I also noticed that my voice was weaker and hoarse in the high end of my range. In July I began to notice that my forearms were shrinking. My watch which has a sized metal band began to slide up and down my arm when it once had been a great fit. I also noticed that my calves which were once defined began to shrink as well. I figured I had stopped running so that was probably the cause. By the time I saw the Neurologist in July I was having muscle twitching in my arms and legs. She completed a full hour long work up and exam which examined my history, my recent MRI, tested my reflexes, dexterity, and muscle strength. I told her I was concerned about ALS and she told me that she didn’t see anything that looked like that to her at all. She suspected a pinched nerve and ordered some x-rays of my neck. She also scheduled me for an EMG to put my mind at ease. When the x-rays of my neck came back normal I felt sure that the EMG would show problems and that I’d then start the process of confirming diagnosis with a second neurologist and learning to live with ALS. On EMG test day they completed the nerve conductivity part of the test on my left arm and leg, and then came back to do my right arm. The doctor told me that was because she hadn’t seen numbers that good all week and wanted to compare the left to the right. They then completed the needle part of the test on my right side working from my shoulder down to my arm and leg to my ankle. At the end of the test she said it was as she’d expected. No ALS. Needless to say I was relieved. I asked her what could be causing my issues and she said anxiety. I agreed to let her increase my dose to 20mg a day of Celexa and took my mother who’d accompanied me to the test out to lunch. I again set my mind to overcoming anxiety.
Throughout the rest of July not much changed. I took a couple trips, played golf and was actually playing better than I’d played in years. At the beginning of August my neck began to feel weak again though, worse this time and constant, my head felt like it weighed 200 pounds. This weakness was not also accompanied by muscle twitching in the back of my neck. This went on for about two weeks. Then I went on a vacation with my family for ten days and by the end of that trip my neck felt better and actually hasn’t given me any other problems since. I did however begin to have some difficulty swallowing then. No choking or anything too serious but enough for me to be conscious of it. My hands also continued to feel awkward and clumsy but that too isn’t really noticeable unless I’m handling small objects. My typing doesn’t seem to be affected, and I can still play piano and guitar with no trouble. At the end of August I saw my neurologist again for a follow up and she completed the standard exam. I told her about my swallowing difficulties and shortness of breath, as well as my continued clumsiness in my hands. She was not concerned however and scheduled another follow up for the end of December. She did however refer me to the Neurology department at the University of Virginia just to ease my mind and I got an appointment for the beginning of October. Between the time I saw my regular Neurologist and my appointment at UVA I started feeling short of breath more often. Even when playing golf I felt like I needed to rest and recover after every swing. I called my regular Neurologist and she was out of the country. I did however get a call back from one of the other doctors at the office and he scheduled me for more blood work and made an appointment for me to have some breathing tests with a pulmonologist. The breathing tests did show some problems but the doctor said the results showed they were issues of obstruction possibly due to my formerly being a smoker. I quit in 2011. He also said that the results were not consistent with breathing issues seen in neurodegenerative diseases, and he scheduled more tests. I went in for a lung scan to see if I had a pulmonary embolism, and a metacholine challenge to see if I had asthma. Both of these tests were normal but the pulmonologist prescribed me a once a day inhaler of Spiriva to hopefully help overcome the obstruction and breathing difficulty.
October finally came and my symptoms had progressed to more twitching in my arms, legs, torso, eyelids, and muscle shrinking in my arms and legs. I finally went to my appointment at UVA and had another full Neuro exam. I then had another EMG which they completed again on my right side. This time they warmed up my hands and feet in big soaking tanks before the test. At the end the attending Neurologist came in, repeated the Neuro exam and told me that they don’t see any sign of anything unhealthy in the tests or EMG. No ALS. He said that they diagnose ALS about once a week in the neurology department there and that the EMG would definitely detect any abnormalities even before there were symptoms. Since I’ve definitely had my symptoms quite a while I felt relieved again. I asked him what he thought could be causing my muscle shrinking and he recommended I begin exercising again, saying that perhaps I overreacted to my symptoms and stopped my regular routine which might explain my loss of muscle. I left and took my poor worried mother to dinner this time and tried to process all of this. While I certainly appreciate the relief of the good news, I still have no explanation for the muscle loss. I hadn’t been lifting weights to keep my arms in shape and now I can easily put my index finger on my other hand in between my wrist and my watch band. My legs are also thinner, and I’m having more trouble swallowing again. I’ve not lost weight but I’m pretty sure it’s because I’m offsetting it in the middle. I’m now currently carrying a bit of a belly I’ve never had before. I’m 6’3’’ and have maintained around 195 pounds. I also noticed this week that when I hold my teeth close together I can feel a slight chattering. My hands are getting thinner, clumsier lately, I’m constantly out of breath and feel weaker all the time but still have no answers at all. I can still run and throw in the yard with my nephews but I’m immediately winded. I’m sure this is not a unique story here but I’d love any insight or ideas anyone might have. Thank you all so much for taking the time to read this! I didn’t intend for it to be so long but looking back it’s been a long year so far…