Cramps and ALS
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First, I am no doctor, but I am a scientist, so my approach to your case would involve detailed analyses of the facts surrounding your case. There are many items that you need to address.
First, you mention that there are several cases of ALS in your family. Are they members of your immediate family? Has genetic testing been performed on you and your relatives with ALS to determine if the genetic predisposition exists? Additionally, there have been epidemiological studies that suggest an increase in the incidence of ALS linked exposure to certain chemicals and even occupations. Do you or your relatives with ALS have these in common?
Second, you mention that you have been experiencing fasciculations for over 2 years. Generalized fasciculations are typically not associated with ALS. Fasciculations due to ALS are caused by death of the nerves and necrosis of the muscles enervated by those specific nerves. The muscle cramping has the same etiology. However, fasciculations and cramping usually occur after muscle weakness and atrophy, although there have been exceptions.
Although there are a few cases reported in medical literature of cramps and fasciculation prior to the muscular atrophy and weakness of ALS, they are the exception rather than the norm. In at least one of these cases an abnormal EMG presented prior to weakness and atrophy. You had an EMG performed 6 months ago, during the period that you were experiencing fasciculations. Any abnormalities would have shown up then. EMG studies will find abnormalities before other symptoms appear.
There are numerous causes for cramping and fasciculation besides nerve and muscle necrosis. Neuromuscular hyperexcitability, the cause of BFS, is one. Hyperthyroidism is another. Autoimmune problems, fibromyalgia .... the list goes on and on. Muscles can cramp after exercise and overuse. Also, taking supplements (Ca, Mg, K, etc.) may actually cause problems if it is disturbing the neurotransmitter balance. You may be experiencing calf cramps during your sleep due to periodic legs movements resulting in muscle contracture. Restless leg syndrome can cause such periodic movements.
Like I said, I am not a neurologist. However, I do suffer cramp-fasciculation syndrome. I am a 40 yr old male, and I have had generalized fasciculations for over 3 years. During this time I have had fasciculations wax and wane, with hotspots flaring up from time to time. Fasciculations in my feet have been virturally continuous, and have been accompanied by cramping. Recently, I have experienced a flare up in my calves, with cramping and fasciculation. However, I've had cramping in areas without fasciculation.
Given your association with those with ALS, it is natural for you to be apprehensive. However, without weakness or atrophy, cramping and fasciculations are not indicative of ALS. A clear signature on your EMG should be apparent. Your familial history might warrant another trip to the neurologist, if not for medical reasons, but for peace of mind and your sanity.
Based on your experiences, you have a great deal of knowledge about ALS. However, knowledge can be dangerous without the wisdom to apply it. Trust your neurologist's wisdom, and if he/she pronounces you healthy, then believe it. Remember, you should not fear death tomorrow so much that you forget about living today.
Dave
My mother as well as her elder brother died from ALS. There is no data available on previous generations of my family. No testing was performed. Testing cannot really clarify this situation as only 10% of Family ALS has the SOD1 defect.
My mother and uncle did not live at the same place, and did not share the same occupations, except in their childhood. To my knowledge, they never have been specially exposed to chemicals.
In fact, statistical data on early symptoms of ALS, EMG testing and time should be published to address the concerns of people in my situation.
There are many people worried by plain fasciculations.
A family history of ALS makes it much more uncomfortable.
When new symptoms (like cramps this time) suddenly appear and persist, it is scary.
It is unwise, I agree with you. And your advices help to be less pessimistic.
Death is certainly feared, but the damage done to family by such a disease is what really breaks a heart.
Many thanks
Michael
I get percevied weakness but can still do anything I want to do but sometimes I feel stiff and ache. I have been under a state of very high anxiety with constant adrenaline going since January. My husband thinks my mental state is causing a lot of my physical problems worrying constantly and being tense and depressed for so long.
Just wondering what your opinion is.
Thanks!!
There are several papers that have been published regarding benign fasciculation and ALS. If you live near a university or teaching hospital, you can take a look.
de Carvalho M, Swash M., Cramps, muscle pain, and fasciculations: not always benign? Neurology. 2004 Aug 24;63(4):721-3.
de Carvalho, M., Pathophysiological significance of fasciculations in the early diagnosis of ALS, AMYOTROPHIC LATERAL SCLEROSIS AND OTHER MOTOR NEURON DISORDERS 1: S43-S46 Suppl. 1, MAR 2000.
Okuda B, Kodama N, Tachibana H, Sugita M., Motor neuron disease following generalized fasciculations and cramps