ALS & Fasciculations posted by Dr. Will

[jebmd]

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

[leaflea]

Thanks SAM, your posts lately have been really inspiring. I wanted to point out to jebmd that my twitching also followed a long wait for answers about mysterious health phenomenon. Mine was bilateral leg lymphedema which I still have no strong answer about, only that it does not seem to be caused by malignant cancer. But it took a long time to discern this with many scans I did not even want. Chrissi in Germany has posted something that might link gut health to both lymphedema and BFS. And I know gut health is an interest of SAM. I know having a relatively long-term health scare has also happened with others here like bfsburger. And "Up to Date" which I also access has not helped one bit with either of my recent health fears! In my mind I was linking lymphedema and als - really what are the odds of having two mysterious and rare disorders back to back such as bfs and unexplained adult onset lymphedema? There seems to be something about that long term stress combined with a health anxiety tendency that leads to this (health anxiety is actually rather common amongst health professionals, it is a secondary trauma to the work we do and see)...certainly other stresses as well or viruses. My GP said he sees twitching as an initial complaint about twice per month, but he has never had a case of ALS as of yet (he is young and practicing maybe only four years so zero cases of ALS in about 200 twitchers he has seen). jebmd, wondering how frequently a patient presents to you oe your clinic with twitching alone?

[jebmd]

Leaflea,
I have NEVER been involved in the diagnosis of ALS in a patient-for which I am grateful. As to twitchers-I'm certain that I read about BFS in medical school but that little to no time was devoted to it and so I had forgotten all about it until I started my symptoms in Sept/13. I have had maybe 5-6 patients in my 19 year career present with twitching and ONLY involving the eyes-which I have never attached any importance to, having had that in my teens. My family doctor has seen one ALS case in her 20 year career and when I discussed the twitching with her, she told that that her sister had been similarly investigated a few years before and that she herself (an athlete-which I am not) has had many twitches in her body in the arms and legs that are easily seen. Likewise, one of my in-office doctor colleagues has been getting twitches for years in the calves, forearms and fingers, even in the vulvar area. She also said that a few years earlier, she had an eye twitch that lasted 9 months. Never had any investigations because "denial is her favourite method of diagnosis in her own case". So I have seen very few cases of BFS-which begs the question, why if it is so common? When I casually mentioned my twitching to another in office colleague her response was "well everybody gets those". So I guess it is so common, that unless one also carries the anxiety component it does not get to a doctor.
J

[Karenmg]

I've experienced twitching for years in my legs. For the past year I've had them in my left tricep, elbow and arm. Seems like getting worse as twitches are now heavy in upper extremity and at times can move my entire arm. Comes and goes. I had EMG last May. Showed pinched nerve C7. I'm 62. In good health except for tinnitus which I've had since 09. The tinnitus is now 70 percent better with hypnotherapy. No weakness. No other symptoms My fear at this age is Parkinson's MS father and daughter. I've not had an MRI. Your thoughts on further testing and progression of the bfs. Bfs with cramp syndrome was the diagnosis after the EMG. No nerve degeneration Thanks.

[jebmd]

Hi there,
I was not sure whether you were addressing your question to me or to Dr. Will. If MS is a consideration, than an MRI is required and sometimes a lumbar puncture (did I understand correctly that your daughter has MS?). Parkinson's is a clinical diagnosis made by a neurologist including resting tremor, gait difficulties, cognitive decline etc.--there are no specific diagnostic investigations I believe, the issue is one of lack of dopamine (a neurotransmitter) in the brain and medications are used to increase this. An MRI of the c -spine can also show the C7 radiculopathy if it is due to disc herniation or spinal stenosis.
Hope this helps and my apologies if this question was meant for Dr. Will.
J

[garym]

In the meantime, I am trying to be a doctor, wife and mother to the best of my ability.

Hello Joanne and welcome to the forum.....believe your neuro and get back to being a doctor, wife and mother. That is the important stuff, and while I'm not a doctor or at all qualified to make any dx your sxs are very familiar/common, and anytime you spend worrying about als is going to be wasted......the one thing i wish I could change for every member here is the amount of wasted, unrecoverable time we all spend away from our families (mentally if not physically) and the important stuff in life. that is the true loss each of experience in some form or another while worrying about bfs.

take care,
gary

[jebmd]

Truer words were never spoken! I have worried so much in the last eight months that I don't even remember how to live. In the meantime, I have had two thyroid surgeries because cancer was found on the first thyroid lobe that was removed and I am now one week post second surgery, this time all is well. The twitches increased significantly after both surgeries but seem to be dying down now. I am looking forward to my mother coming to stay today and my trip to the UK in July. Like I said to Xina in another post (and I really am trying to follow my own advice)-time to go back to living.
Sorry it took so long to respond, surgery got in the way but thanks for the wise words which all of us on this board should be living by.
J