ALS,Anxiety, or something else

[scared mom]

I am a 38 year old mother of three.  About 10 months ago I had muscle twitching near my thumb in my right hand.  It lasted about two weeks and then went away.  About a month ago, I felt it again in my left hand although it was not as pronounced.  While I was at the doctor for a sinus infection, I mentioned it to him.  He inadvertently mentioned that ALS can cause this.  (At the time I was not experiencing it as widespread as I am now.)  I did begin experiencing the fascilations all over and became extremely anxious.  I called him back and he wrote me referral to a neurologist and also wrote me a prescription for  Buspar to help with my anxiety.  I saw the neurologist yesterday and the one abnormality he found was hypereflexia.  I am going in tomorrow for the blood work up and next Wednesday for an MRI of the spine (if that is normal he'll schedule one of the brain).  When I go for my follow up he'll do the EMG.  He did not notice any weakness during the exam.  Would I already notice weakness in my right hand if the fascilations 10 months ago were ALS?  I am also having a lot of pain in my calves even when I am trying to sleep.  I have read about a "benign fascilation syndrome."  I am just really scared now because I have read that hypereflexia can be associated with ALS.  Any insight on all of this would be greatly appreciated!

[CCF Neuro[P]-M.D.-RPS]

Dear Scared:

I am sorry for both the physical symptoms and mental anxiety your experiencing.  We do see patients your age with new onset ALS, but this is uncommon this early.  When the symptoms of muscle fasciculations are noticed in ALS, there is always a objective sign (the neurological exam) of muscle weakness.  The hallmark of ALS is having both upper and lower motor signs.  One sees the upper motor neuron signs of weakness, hyperreflexia, spasticity, extensor plantar responses, and clonus, with lower motor neuron signs of hyporeflexia, flaccidity, atrophy, fasciculations and weakness.  As you can see from the symptoms, there is a mixture but some keys we look for are muscle weakness with other signs combined with no changes in the sensory system or cognition.  So, against ALS is the pain in the calves, no true upper motor neuron signs (hyperreflexia can be misleading unless there it is done repetitively and combined with plantar response-or by someone who does the neurological exam alot and knows the difference between anxiety induced hyperreflexia and hyperreflexia).  The time you have been having symptoms should have been long enough to give you significant motor weakness, but you do not express loss of strength.  

What do I think?  You do not have ALS.  Get the testing to rest your mind of anxiety, but I will bet they will be normal.  I will buy you a diet coke if I am wrong.

Sincerely,

CCF Neuro MD

[Amy]

Why do GP's do this to patients?  They scare the dickens out of us without getting the information needed for a diagnosis.  An ER Dr. did the same thing to me only it was MS.  His unfounded diagnosis caused me months of nightmares, panic attacks, missing work due to stress and severe depression and anxiety.  I am (thank goodness) doing so much better now, but for 6-8 months it was a nightmare.  I understand that Dr's sometimes give people bad news, but shouldn't they gather information before mentioning a horrible disease like MS or ALS!  I feel better now and hope and pray that you feel much better after the testing.
God Bless and Good Health.

[scared mom]

Thank you for your comments and support.  I hope it turns out to be nothing and I can put all of this behind me.  Thank you Doctor(I hope you are right and I don't have to collect on the diet coke!) and thank you for your comment Amy.  I'm glad everything eventually worked out for you!

[Liz]

First let me start by saying that this is an extremely valuable service here.  I made use of it over two years ago myself, in attempting to get some reassurance myself for my husband's onset of speech slurring.  I got a similar message, he doesn't have ALS.  However, as things in the profile started to change, so did the answers I sought. These doctors do an excellent job in providing information, information which I still read with interest.  But they cannot possibly diagnose anyone through this vehicle and they are very clear about that fact.  I applaud that.

I certainly don't want to add to anyone's anxiety here, although I suspect that I will anyway.  However, I must say that the symptoms of ALS, although described "typically" in the literature, do not always present that way.  According to the literature, my husband should be dead or dying amd extremely debilitated.  However, he currently only has speech problems with slight weakness in the muscles of his thumbs.  He does and always has had the fasciculations.  And he did have 'brisk' reflexes.  Although still not officially diagnosed, his neurologists are convinced it is indeed ALS...by virtue of elimination of all other possible causes.  He plays racketball three times a week and works full time in his own business.  We have been traveling down this journey for over two years, and life has changed little.  We are hopeful that the extremely slow progression of this illness continues and eventually stops with some medical miracle!

My point is to say what one of the docs here told me, sometimes a tincture of time is needed to fully assess the scope of the problem.  My advice is to be dilligent in your pursuit of the answers and expect nothing less than the best from your doctors.  If they are vague or not answering your questions, get another one.  If ALS is a concern, go to a facility that has and ALS or MDA or MND clinic.  I am so very fortunate to be using the services of Johns Hopkins in Baltimore.  Read what you can about the illness, and recognize that it is difficult at times to read what you will read.  Continue to hope and pray that the wonderful researchers out there have a breakthrough that will lead to treatment and even a cure for this awful illness.  And finally, no matter what you have or don't have, live every single day as if it is the only one you have left, for none of us is promised a tomorrow.  Love your family, give to those in need, and take time to smell the roses and relish in the little things that mean everything!  Best wishes to all.

[happygal]

From what I know about ALS  IT USUALLY TAKES ITS VICTIMS VERY RAPIDLY, NOT WITHIN A SPAN OF 5-6 YEARS. Typically very quickly as the body deteriorates rapidly as the muscles start to weaken and in the end breating cannot even be done on your own.  I highly doubt that ALS would linger on for a long period of time say 2 years with very slow progression  Very very unlikely
********BOTTOM LINE***************
There are many things out there that we and Medical practioners espacially DO NOT UNTERSTAND about and probably will never understand about.

ALS is RARE... WE all twith, I had an MS scare, went through all the testing.. almost had a nervous breakdown with anxiety and fear of this disease.  You name it all the symptoms were there.  The muscle twitching started.. the more I thought about it, everything was twitching continously... very badly.  After I got preoccupied with something else, it miraculously disappeared.  Im not saying that those who truly have a disorder need to keep busy and the symptoms will vanish, but for us who might lean toward Anxiety, keep busy and watch it all go away.

We may never understand things.  Alot of my symptoms come and go... but they are not getting worse and I learn to live with it.  We all will die sometime, but sitting here worrying about how, when, why and where will do us no good.  Living a life in fear and fearing the worst will only create more anxiety and possibly true disease.

We all Twitch, Now my joints are cracking, jaw cracking... I could now say I have Lupus?  Who the heck knows and nobody probably will.  I've had just about every test and its normal.  I leave it in gods hands but God Bless all of you on here who are afraid and suffering.  Just know your not alone and you will survive!

[BJP]

Same Here, I have Migrianes with weakness and numbness and visual disturbance. I also twitch and have some very troubleing symptoms. I walk around in fear of ALS,Stroke or something. But recently I learned that the anxiey of worrying about aht it could be is just as bad on your overall health and well being as anything.
Stress and Anxiety affect you in untold ways. The more you worry and think about the symptoms and being sick, the worse you get and the more you notice them and the more new things you find wrong..
Get the tests to ease your mind, but I bet there normal,mine are always..And I have had them several times..and just live your life and enjoy everyday that God gives you..and try not to worry..Ill bet your fine..
I wish you the best....Betty

[Craig]

Carol, I can't believe you're still on the aspartame soapbox after all these years. Stop spreading unsubstantiated claims about artificial sweeteners and for God's sakes, quit insulting the kind Doctor RPS who gives so freely of his time and expertise to help those in need. If you would only contribute one-tenth as much there might be some justification for your life and for your continuing presence here. Go away!!

[BJP]

Craig,
  I for one am by no means on a soapbox about Aspartame,but I would not give a product containing it to my dog. The doctor's here are wonderful and no one has the right to insult them this is true..but unless you have had problems with Aspartame you could not possibly understand...
   Think about the advent of Aspartame and then see the dramatic increase in Neuro symptoms that people are complaining about..My experience was my daughter..She has a disease that requires high carb intake..They did suggest to limit sweets as to control weight gain along with this and suggested sugar free Jello and Light Yogerts and such.  After a few months of this my child staretd to have extreme neuro type problems..numbess tingles in extremities, weakness and all sorts of things..They tested and retested no cause found..even had abnormal NCV tests done...But nothing else..Periphial Neuropathy at age 3 and 4 I dont think so...Then the nurse asked about her diet...and the one consistant that hit was sugar free and fat free and ahh Aspartame.  she discussed this with the doctor and we decided to put her on a BRAT diet for about 3 days then stop all products with artifical sweetner and after about a week or two all symptoms gone...
To prove this in theory we then started her with the Jello again and within a week the symptoms began to return...So we did the brat again and now nothing contianing aspartame comes into my home.
This was done at Johns Hopkins and done under a doctors care and it was enough for me. In fact the doctor is writing an article about this and using my child as an example..Would you consider this fanatical...
Listen sometimes people who have had really bad experiences with aspartame or anything do get really fired up about it, but that gives you no reason to insult them allow them to speak freely babout this because just because you dont agree they may be able to help someone else in their lifetime....
Just my opinion and experience...Thanks

[Craig]

Dear Betty. Free speech founded this great country but you still can't yell "fire" in a crowded theater. There are currently no documented scientific studies that I know of linking aspartame to widespread neurological symptoms but if you can enlighten me as to their existence I would be more than willing to read and learn. Carol has made a career of sorts scaring the hell out of people on this and many other public forums while at the same time criticizing and questioning the credentials of the good Doctors who go out of their way to help those in need. This is unacceptable. If nutra-sweet was indeed the poison she would have us believe the entire world would be at death's door and as of yet I have seen no lines forming outside the local clinics and the hospitals are not yet filled to overflowing. Perhaps my use of the word "justify" was a bit harsh and for that I apologize, however, I stand by the bulk of my comment. I do not work for the food industry and own no stock in the artificial sweetener business. My point here is simple, stick to scientific fact. Innuendo and anecdotal evidence have no place here.

[null]

Wow,
Lots of big words being thrown around.

[Riley]

I read with great interest most of the items on this forum and only wish it had been available to me when I began having symptoms over 10 years ago.  I had a myriad of symptoms...twitching, itching,  burning,  banding, memory problems,  dizzness, tingling and a generally a feeling of having a terrible case of the flu that lasted for several years.  Several MD's and dozens of tests gave no answers and I just had to try and exist hoping it was nothing fatal!  My point is,  one of the many things I tried on my own in a desperate attempt to make myself feel human was eliminating all aspertame or artificial sweeteners of any kind from my diet.  I am sad to say,  it didn't work.  I am not suggesting that it isn't worth a try for someone else...just that it didn't help me.

[JS]

Benign fisiculations or "muscle twitching" is more common than people think.  Fisiculations can be caused by many medications including the caffiene in your coffee.  

There is a benign form of muscle twitching that is also associated with clinical depression and chronic fatigue.  This condition can last for months and even years, but eventual recovery is expected.  It's annoying, but it's not serious.  These fisiculations are not localized they are wide spread.  More noticable after excercise.  

In older people benign fasiculations are commonly seen in the calf muscle.

A diagnosis of ALS is never made on the basis of fasiculations alone.  Weakness and muscle atophy, along with hyper muscle and deep tendon reflexes should be apart of the clinical picture as well as EMG evidence of dinervation in at least three different areas of the body.

Take Care

JS