Pyrs
Member
- Joined
- Jan 27, 2014
- Messages
- 13
- Reason
- Learn about ALS
- Country
- US
- State
- NJ
- City
- Allentown
Hi. Wondering if you can clarify something for me.
I have had a slew of medical issues (mainly headaches/neck issues) for the past 6 months. That progressed to a constant stiff neck and shoulders which would have a burning sensation at night making sleep impossible. About 2 months ago, I started twitching in the burning area, and the twitching a day later spread all over my body mainly stomach and legs, arms. I have episodes of full body crampy pains, particularly in feet and forearms. I also have a lot of myoclonus jerks while sleeping, an involuntary swallowing reflux that kicks in while I am waking up and an internal tremor (like I am shaking inside but not outside). I wake up from sleep very anxious and skakey for about an hour.
I had an EMG at about 6 weeks into the twitching. I saw three neuros. None thought I needed the EMG, but did it anyway. The EMG was 3 limbs, T8 paraspinal, eye and bulbar. It was normal and clean. No fascis or fibs noted, no denervation.
I have been reading some concerning and conflicting messages about early nerve excitability before weakness that may precede the disease.
However, I have also heard from reputable sources that if you are already twitching and that twitching is in fact ALS related, it will absolutely show something abnormal on an EMG. My dr also said that technically an EMG can be too early BUT he would see UMN signs on the clinical and has never seen a case where the EMG and clinical were both clean in a twitching person that progressed to ALS.
Can anyone set me at ease? This is taking over my life. Two weeks post EMG and Im still testing for weakness and worrying about my cramping and worrying that I have this. I have no peace of mind from the tests or doctors and Im thinking I should, right? Being "undiagnosed" scares me. They said benign fasciculation syndrome, but it just seems like a catch all, we don't know diagnosis.
I have had an EXTENSIVE workup of 3 brain mris', cervical, spinal tap, eeg, emg, full body ct scan and blood work, and NOTHING has shown.
I have had a slew of medical issues (mainly headaches/neck issues) for the past 6 months. That progressed to a constant stiff neck and shoulders which would have a burning sensation at night making sleep impossible. About 2 months ago, I started twitching in the burning area, and the twitching a day later spread all over my body mainly stomach and legs, arms. I have episodes of full body crampy pains, particularly in feet and forearms. I also have a lot of myoclonus jerks while sleeping, an involuntary swallowing reflux that kicks in while I am waking up and an internal tremor (like I am shaking inside but not outside). I wake up from sleep very anxious and skakey for about an hour.
I had an EMG at about 6 weeks into the twitching. I saw three neuros. None thought I needed the EMG, but did it anyway. The EMG was 3 limbs, T8 paraspinal, eye and bulbar. It was normal and clean. No fascis or fibs noted, no denervation.
I have been reading some concerning and conflicting messages about early nerve excitability before weakness that may precede the disease.
However, I have also heard from reputable sources that if you are already twitching and that twitching is in fact ALS related, it will absolutely show something abnormal on an EMG. My dr also said that technically an EMG can be too early BUT he would see UMN signs on the clinical and has never seen a case where the EMG and clinical were both clean in a twitching person that progressed to ALS.
Can anyone set me at ease? This is taking over my life. Two weeks post EMG and Im still testing for weakness and worrying about my cramping and worrying that I have this. I have no peace of mind from the tests or doctors and Im thinking I should, right? Being "undiagnosed" scares me. They said benign fasciculation syndrome, but it just seems like a catch all, we don't know diagnosis.
I have had an EXTENSIVE workup of 3 brain mris', cervical, spinal tap, eeg, emg, full body ct scan and blood work, and NOTHING has shown.