Hello all,
I am new to this forum but have been lurking here since September 2013. I am a 46 year old female family physician living in Canada's "winter city". I wanted to thank you Dr. Will for your wonderful post that I read a long time ago that really helped me to calm down when I started experiencing fasciculations EVERYWHERE following a severe viral illness at the end of September 2013. I also read "BFS in a nutshell" also very informative. Being a physician, I felt compelled to look up information on Upto Date, a medical database for information regarding twitching-and wouldn't you know it up came ALS-no better than Dr. Google really since there were only a very few lines about BFS. Needless to say, never having experienced anything like this in the past (twitching, cramping, weakness, fatigue) I also went on the ALS forum. I have a second cousin who died of ALS in 2011 at my age, a high school classmate who died at age 45 in 2012 after living with the disease for 7 years, a high school chemistry teacher who had it and died at age 61 and a more distant relative who was diagnosed in her 80s. This disease was hitting me in the face. I went to my GP of course who found my neurological exam and my bloodwork to be normal. A normal MRI came next. I am deficient in Vitamin D and B12 and am taking supplements for these. I also had anemia in July and had a colonoscopy and gastroscopy that were normal and iron supplements have corrected the anemia. I was waiting for a neurology appointment for EMG that would take several months but one evening in December, I had a horrible fasciculation in the back of my right shoulder that went on for an hour and was very painful into the next day. I finally broke down and phoned the neurologist Dr. K. and told her my symptoms over the phone. I am fortunate that I send over 90% of all my neurology referrals to her and she took my call immediately even though I told her receptionist not to interrupt her patient flow and that this was a personal call-I myself get quite annoyed when this happens. On hearing of my symptoms, she scheduled my EMG for the next day and told me straight out that she was 99% sure that this was benign but that the EMG should be done which was fine with me. I asked her how many patients with ALS she has seen and her answer was "too many"-so I felt confidant that she had good experience in this disorder. After that conversation, all the twitches that I had been having subsided almost down to background noise I was so relieved-this was before even having the test. I had the EMG the next day and the neuro exam was totally normal as was the EMG. She did not see ANY fasciculation anywhere (nor could I feel any in the office that day) and none were picked up on the EMG either-the test was really no big deal, the worst pain was when she told me to contract the muscle she was poking. I only had the right arm and leg done. She did pick up a case of mild carpel tunnel in the right wrist.
Unfortunately, I am still twitching, some days are worse. My stress levels are always high because of my job and my kids, one in university and one struggling in high school. I am a poor sleeper and have been for years. I use clonazepam at night to sleep which helps some. My husband is getting fed up with all my obsessing about illness but I see too much suffering almost on a daily basis just as part of my job. He did not believe when I diagnosed myself with appendicitis this past May either until it was confirmed on US. I have started cognitive behavioural therapy in an effort to manage the stress and am thinking about a yoga class. I am also considering calling the neuro back to test my left arm and leg as most of my current symptoms are there-I can see no weakness but do have pain in the upper arms frequently which my be related to my non-ergonomic work station when I am entering my charting into my electronic medical record. Also, I never learned to type so my typing posture and hand position are terrible.
I think it will still take me some time to deal with this but the longer it goes on without anything sinister happening, the better I feel. In the meantime, I am trying to be a doctor, wife and mother to the best of my ability.
I wanted to thank those on this forum who have helped me tremendously with their posts as I went through this diagnostic process. I am still dealing with it of course but hopefully each day will get easier. Thanks for reading and posting.
Joanne