Cramps and ALS

[michael_loom]

Hello,
I am 49 years old male. There are several cases of ALS in my family.  I have been experiencing body wide fasciculations for 27 months now, though much more frequent on left side.
A neurological exam 6 months ago (including EMG) reported nothing wrong.

About 18 days ago, I started to have morning cramps in feet and right leg at wakeup, though my fasciculations have decreased a lot and are very scarce in these areas.

I cannot explain these cramps by BFS syndrome, as for more than 2 years some periods of intense fasciculations have never generated cramping.
In fact, recently, there has been no fasciculation in my right calf where I started to have quite regularly (every 3 days on average) a morning cramp that wakes me up.

The fact that cramps repetitively occurs at same places and not at random (no problem with left calf for instance) seems to suggest it could be caused by amyotrophy maybe starting in these areas, and not by mineral deficiency. For now, I have no weakness so far.

In fact, I rule out deficiencies in calcium, potassium, and magnesium as I have been constantly drinking milk, orange juice, plenty of water, eating bananas. I have been taking magnesium tablets for 2 weeks with no improvement.

I read on ALS sites that cramps may be an early sign of ALS, and may even precede weakness by months or even years.

Could you please confirm this fact?

Can ALS cramps appear with no other ALS symptoms?

Are cramps located in areas that will become weaker at first?

Would an EMG always be positive in case of early cramps due to ALS?

Thanks

[David_M_M]

Michael -

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

[David_M_M]

No, I don't frequent the MGH site. In fact, I usually visit only this site and the AboutBFS.com site. My visits are usually during times when my symptoms of CFS-BFS flare up, and I am looking for ideas for symptomatic relief. My GP is reluctant to prescribe benzodiazepines or carbamazepines because of the potential for dependence. So I spend a lot of time drinking copious amounts of tonic water and trying different theraputic approaches. However, nothing has worked very well.

However, I know that many are worried (unnecessarily) about ALS, and I try to calm the fears. Michael is an exception, because ALS appears to run in his family. He should be cautious. But for most of us, we just need to get over our anxiety.

[Craig]

You sound familiar, friend.
Do you frequent the MGH site, by chance?

[David_M_M]

Nate - Full spectrum vitamin E is available at GNC. You can also order it online at Drugstore.com. It can be expensive, though.

To look at the complete articles, you would most likely have to go to a university with a medical library. As for these articles, you are correct that these cases where BFS-CFS proceeds to ALS are rare. Probably no greater than the general population.

Not much study has been done on BFS-CFS, since it is not fatal and drug companies haven't decided they can make money off of treatment (erectile dysfunction isn't fatal either, but that hasn't stopped them from developing Viagra, and Cialis). Since symptomatic relief can be found using anti-seizure drugs like Tegretol and Klonopen, there isn't much interest.

Braudel - I think you hit the nail on the head. The internet is both a blessing and a curse. There is so much information, but a little knowledge can be dangerous. It is amazing how we, armed with a little information but without the experience or wisdom, think we know better than our neurologists.

Neurologists have to not only completed medical school, but they undergo additional specialization training before they are officially certified as neurologists. They have a wealth of experience and knowledge. They all know the symptoms of ALS. Most likely, they had to deal with several ALS patients in their residency. I'm sure that this experience is one that sticks with you. So when your neurologist gives you a clean bill of health, you should accept it and go on living.

I think part of the problem is that the media has us constantly on edge, constantly in fear. The lead story is almost always about some crime or tragedy, while the good news gets buried. We get trained to expect the worst. When we have some symptoms, we often think the worst rather than the most probable.

Michael's case is unique, since ALS appears to run in his family. Therefore, he should be more concerned about neurological changes. For the rest of us, we need to keep it in perspective. With a population of 293 million people and an incidence rate of 1 in 100,000, there will be 2930 people in the United States who develop the disease during their lifetime. If 10% of all cases are familial, then that reduces to 2637 people out of the entire US population who develop sporadic ALS. That is not very many. Most people who develop the disease have onset after the age of 50. Therefore, people with muscle twitching in their 20s and 30s should not fret. Of course there are rare exceptions (Lou Gehrig was in his 30s, Stephen Hawking in his 20s), but those are exceptions. So if you are under 40 and begin to have muscle twitching and cramping, you probably have BFS-CFS. Also, remember that other things can cause muscle twitching too: fibromyalgia, chronic fatigue syndrome, hyperthyroidism, etc.

I can empathize with almost every person who posts on this subject. There is a tremendous amount of fear and anxiety. I also experience this, even after 3 years of twitching. Periodically, when my symptoms flare up (like now) and I twitch like crazy, and my feet and calves cramp, and I feel weak, I relapse into negative thinking. I begin to wonder, "Is it starting? Is it happening to me?" However, I go back and review everything I have read and also work to reassure others. I find that by reassuring others, I reinforce what I know and reassure myself. So, this is like a form of therapy for me. :-)

Cheers,
Dave

[michael_loom]

Many thanks Doctor,
Thanks a lot Dave for these references.
Braudel, your encouragements are welcome.

Michael

[NateB]

Dave,

I was not able to access the articles you cited online but I did read the abstracts.  I must say, as a 10 month twitcher those articles seem a little scary.  However, it seems from the abstracts as though each article cites a single case in which "benign" twitching with cramps preceeded weakness and eventual ALS diagnosis.  Without the benefit of reading the entire articles, it would seem as though these cases are the very rare exception to the norm, thus prompting the article.  Am I correct in that assumption?

Also, you mentioned a vitamin-e type supplement in your post.  Where would one find such a supplement and under what name?

Thanks.

Nate

[CCF-Neuro-M.D.-CS]

Cramps can be seen in ALS, but are not specific to ALS. They can be seen on various normal conditions, muscular problems, nerve problems, and electrolyte problems. Without taking you history and examining you, I can not make a diagnosis. ALS is a diagnose which is made by a neurologic examination, history, and an EMG examination. I not aware of a specific study looking at EMG's and cramps in ALS, and therfore could not answer this question. I would encourage you to have a consultation with a neuromuscular or ALS specialist at an academic hospital. They will be able to review everything and answers your questions. Good luck

[David_M_M]

You should then see your neurologist. Based on your family history and onset of new symptoms, your concern is warranted.

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. J Neurol Sci.  1997 Sep 10;150(2):129-31.

Blexrud MD, Windebank AJ, Daube JR., Long-term follow-up of 121 patients with benign fasciculations. Ann Neurol.  1993 Oct;34(4):622-5.

AJ Tahmoush, RJ Alonso, GP Tahmoush and TD Heiman-Patterson, Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder, Neurology, Vol 41, Issue 7 1021-1024, 1991.

Fleet WS, Watson RT., From benign fasciculations and cramps to motor neuron disease. Neurology.  1986 Jul;36(7):997-8.

For the most part, fasciculation and cramps without weakness are benign. However, there have been a few cases of patients who progressed to ALS. This is the exception, though, rather than the norm.

According the the Muscular Dystrophy Association, 20% of familial ALS is associated with the SOD1 gene, which is autosomal dominant. However, you would have a 50% chance of inheriting the gene if your mother has it. However, there are cases of individuals with the SOD1 gene defect that do not develop ALS. There are 8 identified genetic defects linked to familial ALS (see http://www.medterms.com/script/main/art.asp?articlekey=34043), so there is more to test for than SOD1.

Taking vitamin supplements of mixed tocopheral (Vitamin E) has shown to delay the onset of ALS in laboratory animals, so you might consider doing this. Most vitamin E is d-alpha tocopheral, so make sure it has the complete spectrum.

Good Luck,
Dave

[dont]

What is your opinion of having wide body from eye brow to toe fasciculations for 9 months and having a normal one limb (most affected area) EMG. I had a normal EMG of 5 muscles in my right leg on 9/13 at 8 months into twitching with mild cramping. I asked my neuro if it was enough to test one leg and he said yes because I show absolutely no clinical signs of the test and he test my most affected limb. He said I am one of the strongest women that he has ever examined that is not an athelet. In addition my exam is totally normal.

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!!

[michael_loom]

Thanks Dave for your comments.

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

[braudel]

Hi,

I have twitches and minor cramps as well. I was very stressed due to this for a while. yester day I had an emg performed(though a shory one-2 leg, 1 hand, 1 arm muscle)by an assistant prof. neurologist. before that another neuro professor in cornell weill center told me that 100% i did not have als.

I think you are probably in similar situation. I think internet palys a factor here. Any report before 2000's is different from today's conditions. Many people today initially self diagnose through internet, and once one sees twitchin and als we all rush to neurolgists, in 1990's and bvefore minor cramps and twitching was hardly a reason to be sent to a neuro, and in many cases an emg was done after other  als symptoms appeared, and in rerto people reported that they had cramps and twitches before.

The advance of internet is really effecting our understanding of ALS vs BFS(or anxiety) as more more data sample is being collected on what % people with cramps and twitches actually end up with ALS. My own neuro told me that personally in the last 2 years she saw 20 people who was afraid of Als which was due to internet, and no none of them had ALS. She said she has seen many Als patients, and all hand some failure in neuro exam even before emg.Still she gave me an als to set my mind at peace, have another emg, and have your mind at peace as well.