LifeGoesOn
New member
- Joined
- Jul 31, 2012
- Messages
- 2
- Reason
- Learn about ALS
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- US
- State
- OR
- City
- Eugene
Hello all! I've been a silent reader of this forum for months and appreciate the quality of discussion and people who dedicate their time to helping and consoling others. In my case, I've reached a point where I feel I need more than just being a passive observer, so please pardon me if my questions have been answered elsewhere or are difficult to answer. I'm just trying to determine what to do next.
A bit about me: I'm a 44 y/o male that started to experience a slow onset of exercise intolerance and fatigue over the past 2-3 years, with other symptoms beginning fall of 2011: regular nighttime sleep disturbances such as awakening multiple times with a fast heartbeat, horrible insomnia (0-4 hours of sleep a night for a period of months), feet sweating at night that progressed to a burning feeling, sudden onset of stomach muscle "ratcheting" when pulling myself up in the form of a situp, regularly waking up (when able to sleep) with numbness in an arm or fingers, and then it all culminating with a day where I suddenly felt deep leg pain in both legs (3/1/12) followed by a feeling of right leg weakness (3/2/12) and fasciculations in both calves (3/8/12 onset). All along this time, I'm working with my primary doc, and of course all blood tests and xrays/CTs come back normal. So, I'm referred to a Neurologist who does a NCV/EMG which comes back normal (3/15/12) although no fasciculations were recorded in the EMG. I then see a different Neurologist (who specialized in MND) who tells me that my clinical exam is normal and my symptoms don't sound like MND and that I should follow-up in 3 months. During this time, my fasciculations spread to my entire body and although my calf fasciculations are 24/7, they are definitely worse in the morning, although again, they are present all the time. The other fasciculations (body wide) I have are sporadic (but regular in occurrence and I'm also bound to feel a fasciculation somewhere within a 5 min period) and seem to come and go without reason. My right leg weakness and exercise intolerance continues (although I still try to work out although I'm not at the same level I used to be able to tolerate) and after any exercise at all, I wake up with weak-feeling arms/shoulders, legs, etc but again, nothing has progressed to "clinical weakness" nor do I have any obvious atrophy although my calves look smaller/flatter to me than they used to. I also still experience some sporadic sensory symptoms such as my right leg burning or a sudden heat spot on a foot and my hands and feet sometimes feel sore (never used to) and occasionally when I'm doing some form of exercise a muscle will momentarily cramp... So, bottom line is I'm a mess and worry about my persistent symptoms considering they have gone on for a period of time without abatement. My most recent interaction with the last Neurologist (about a month ago) was to find that I now have "brisk" ankle reflexes and 2-beat clonus in my left ankle. All was still declared normal in addition to a battery of blood tests checking for myopathies, autoimmune disorders, Lymes, viruses, etc, with a final comment of "good luck" and that I should keep a symptom log month-to-month but ignore my day-to-day symptoms. So, I'm left wondering what to do next. Follow my Neurologist's advice and wait to see what happens to my leg weakness and other symptoms over the coming months? Go back for another EMG/NCV? Visit an MND Clinic? Investigate other possible conditions (besides MND and BFS)? Continue to worry incessantly (ha)?
Sorry for the long post but as you can see I've got a lot pent up inside! Thanks to anyone who replies....
A bit about me: I'm a 44 y/o male that started to experience a slow onset of exercise intolerance and fatigue over the past 2-3 years, with other symptoms beginning fall of 2011: regular nighttime sleep disturbances such as awakening multiple times with a fast heartbeat, horrible insomnia (0-4 hours of sleep a night for a period of months), feet sweating at night that progressed to a burning feeling, sudden onset of stomach muscle "ratcheting" when pulling myself up in the form of a situp, regularly waking up (when able to sleep) with numbness in an arm or fingers, and then it all culminating with a day where I suddenly felt deep leg pain in both legs (3/1/12) followed by a feeling of right leg weakness (3/2/12) and fasciculations in both calves (3/8/12 onset). All along this time, I'm working with my primary doc, and of course all blood tests and xrays/CTs come back normal. So, I'm referred to a Neurologist who does a NCV/EMG which comes back normal (3/15/12) although no fasciculations were recorded in the EMG. I then see a different Neurologist (who specialized in MND) who tells me that my clinical exam is normal and my symptoms don't sound like MND and that I should follow-up in 3 months. During this time, my fasciculations spread to my entire body and although my calf fasciculations are 24/7, they are definitely worse in the morning, although again, they are present all the time. The other fasciculations (body wide) I have are sporadic (but regular in occurrence and I'm also bound to feel a fasciculation somewhere within a 5 min period) and seem to come and go without reason. My right leg weakness and exercise intolerance continues (although I still try to work out although I'm not at the same level I used to be able to tolerate) and after any exercise at all, I wake up with weak-feeling arms/shoulders, legs, etc but again, nothing has progressed to "clinical weakness" nor do I have any obvious atrophy although my calves look smaller/flatter to me than they used to. I also still experience some sporadic sensory symptoms such as my right leg burning or a sudden heat spot on a foot and my hands and feet sometimes feel sore (never used to) and occasionally when I'm doing some form of exercise a muscle will momentarily cramp... So, bottom line is I'm a mess and worry about my persistent symptoms considering they have gone on for a period of time without abatement. My most recent interaction with the last Neurologist (about a month ago) was to find that I now have "brisk" ankle reflexes and 2-beat clonus in my left ankle. All was still declared normal in addition to a battery of blood tests checking for myopathies, autoimmune disorders, Lymes, viruses, etc, with a final comment of "good luck" and that I should keep a symptom log month-to-month but ignore my day-to-day symptoms. So, I'm left wondering what to do next. Follow my Neurologist's advice and wait to see what happens to my leg weakness and other symptoms over the coming months? Go back for another EMG/NCV? Visit an MND Clinic? Investigate other possible conditions (besides MND and BFS)? Continue to worry incessantly (ha)?
Sorry for the long post but as you can see I've got a lot pent up inside! Thanks to anyone who replies....