ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 10-15-2006, 11:01 AM #1
arrigoar arrigoar is offline
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Default Please Help!

Hi All. I am a 25 yr. old male and have a huge ALS fear. I have twitching in various places throughout my body and my right arm and leg feel week. I have been to my GP twice who has done strength tests and reflex tests. Everything was fine. I fear I am getting some atrophy in my right thumb pad by my wrist. I have full function of my thumb and wrist though.

I believe the weakness is perceived, but things feel heavier in my right hand than in my left. (I am right handed). I had an MRI of my C-Spine and brain and everything was okay. My GP insists that anxiety is bringing upon these symptoms, but asked if I would like to go to a neurologist for piece of mind. I am going in two weeks.

My symptoms have been going on for about a month and a half now. Shouldn't I have more significant weakness by now if I had ***?

Also, is the sequence of the disease like profound weakness, followed by atrophy then twitching????

Please help...I am so scared!!

Many thanks,

Tony
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Old 10-15-2006, 12:02 PM #2
Paul Wicks Paul Wicks is offline
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Hi Tony,

Sorry to hear you're so anxious about this. First off, I would say that ALS in someone of your age is highly unlikely. Not to say it's impossible, at least one of our regular members here was dx'd at an earlier age than that.

Have you met anyone who's had ALS? How did you come across it? It's very common for someone to read a list of symptoms, become worried that they have them, and fall into a cycle of distorted thinking about how they're getting a terrible illness.

Unfortunately from the pattern of signs that you've described (i'm not sure I'd say they were symptoms at this stage), it's impossible to say very much. If this were ALS, I'd say keep an eye out for muscle wasting in your hands. This shows up as the bones in your hand becoming more prominent.

Twitching is fairly non-specific and frequently occurs in healthy muscle. It can certainly be caused by anxiety. In ALS there are fasciculations which are different because they look like rippling patterns underneath the skin, and tend to happen in large muscles like legs, forearms, and the chest.

What do you mean by weakness? Do you mean you can no longer lift a heavy saucepan? Does your foot drag along when you walk? If it simply feels like very heavy things are quite hard to lift but you can still do it, that's probably nothing significant.

If you have other symptoms of anxiety or a mood disorder you might want to consider seeking treatment for those, particularly if worrying about ALS is causing you a great deal of distress or the thoughts you get are intrusive.

See your neurologist, let us know how it goes.

All the best

Paul
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Old 10-15-2006, 08:12 PM #3
JAH39 JAH39 is offline
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Hi Tony,

Paul is correct, someone as young as yourself, it is unlikely but not impossible to be ALS. Have you had an electromyogram (EMG) test performed? If not, have your neurologist perform this test. It is a painful test and to be blunt, it hurts like Hell. Here's a link that outlines what an EMG test is.

http://en.wikipedia.org/wiki/Electromyography

Best of luck,

Jeff
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Old 10-16-2006, 10:42 AM #4
arrigoar arrigoar is offline
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As far as my weakness symptom goes, it feels like my right arm is weaker than my left. I lift a book with my right arm and it feels heavier. I can still lift heavy objects. I can go to the gym and curl weights, run on the treadmill, etc.

Isn't profound weakness usually the first sign?

I am going to my GP today to follow up and I have a neurologist appointment next friday.

My GP doesn't see the need to go, but offered for piece of mind. I am a hypochondriac, and he thinks these symptoms are somatic.

Do you think I am okay???
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Old 10-16-2006, 11:10 AM #5
lisag lisag is offline
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Hi..I really can't add too much to what Paul and Jeff have said...although I feel if your doc thinks it is anxiety related it probably is..reading a list of symptoms tends to play tricks on ones mind..a few might fit for a terminal disease but they may too fit for things that are completely benign..so be careful and try not to self diagnos...anxiety can also have adverse affects on the body..it can cause twitching of muscles..and many other physical symptoms...I'd try to see if there is anything the docs can do to help get the anxiety more under control..Lisa

PS...In regards to muscle weakness you are probably right ..one arm is more than likely stronger than the other ..which as a former exercise instructor ..I can tell you is "completely normal" as very few people have perfectly symetrical strength..such a thing is virtually non -existent...as people tend to use one limb more than the other to carry heavy things with ..and therefore the limb that is used more hypertrophies more than the other..." absolutely normal" for this to occur...my advice there is if your doc feels you do not have ALS is... to try train the weaker arm with a slightly heavier dumbell than the stronger arm...see if after awhile the weaker arm does not become stronger..get plenty of rest and eat a proper diet..now if you had ALS such trainig would probably cause you to become weaker faster...as fatiguing muscles is not a good idea with the disease..however since you can still lift the same amount of weight at the gym..having ALS is highly unlikely...Lisa

Last edited by lisag; 10-18-2006 at 01:33 PM.
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Old 10-16-2006, 12:19 PM #6
arrigoar arrigoar is offline
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The problem is Lisa, is that my right arm is my dominant arm. It feels clumsy, but I can do everything. It feels a little "off" per se.

I hope I am okay...I am scared out of my mind!
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Old 11-01-2006, 06:39 PM #7
jccgf jccgf is offline
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Hi Tony,

Do you know if your doctor has ever tested you for B12 deficiency, and if so what you B12 level was?

I was once diagnosed with BFS, and several other "idiopathic" conditions like BVVP (benign paroxysmal positional vertigo), and idiopathic premature ventricular contractions. I went to about 8 specialist over 3-5 years... and nobody could find anything. I believe by this point my doctor thought I was a hypochondriac or worse. I was beginning to feel like one, too, until the symptoms began worsening at a very rapid pace. Finally my doctor sent me fpr a neuropysch evaluation.... and a neurologist thought to check my B12 level, and thank goodness knew that B12 deficiency sometimes exists in someone with a low normal level. Mine was 294 (150-1100). All of my symptoms resolved with the correction of my B12 deficiency.... and my benign and idiopathic diagnoses all disappeared.

SO... you might want to visit the Vitamin, Nutrient board here... and ask rose about B12 deficiency. I think this is definitely something you should consider.
http://neurotalk.psychcentral.com/fo...sprune=-1&f=49

Also check out the Peripheral Neuropathy board...as twitching and weakness can be a sign of nerve damage...from many causes including vitamin deficiency, medication side effect, gluten sensitivity, thyroid disease, and bunches more.
http://neurotalk.psychcentral.com/fo...sprune=-1&f=20

You can also find the list of symptoms I had with my B12 deficiency by checking The Gluten File linked under my signature. At the bottom of the right bar is a page about B12 deficiency...which links to another page about my symptoms. Have they checked your thryoid function? Sometimes that shows with nerve damage, particularly in the thumb/forefinger region.

I agree with others that the likelihood of ALS is probably slim. But, twitches and weakness can be cause for concern when they are new symptoms for you. It was certainly disconcerting when it was happening to me. I remember the neurologist telling me to call him if I started falling down ... and as I was walking out the door... he suddenly got the idea to check my B12~ because he remembered sometimes patients with B12 deficiency complain about twitching and buzzing.

I hope it will be reassuring for you to hear that twitches and weakness are symptoms many people have. AND... sometimes there is an underlying cause that is treatable, so I think it is good you are exploring possiblities. Left untreated, B12 deficiency can lead to very serious neurological damage. And I must say, I have known many neurologists who failed to test their patients for B12 deficiency....so double check your lab results to see what they have looked at. And if you don't have them... request copies. IF you haven't been tested, check with rose in the vitamin forum about proper testing.

I'd look at some other things.....starting with the suggestions I've given. The people on PN are great, and will probably have some good ideas for things you might want to check on.

Hope this helps!

Cara
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Last edited by jccgf; 11-01-2006 at 07:59 PM.
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Old 11-02-2006, 09:47 AM #8
arrigoar arrigoar is offline
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Thanks for all the input guys. I am scared...and have an EMG scheduled next Thursday. Hopefully this will put my fears to rest.

I went to my GP yesterday to follow-up on my calcium level which was midly elevated and my red blood cell count with also was mildly elevated.

I had a clean neuro exam, with good strength and normal reflexes. I just want the EMG to turn out good.
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Old 11-02-2006, 09:58 AM #9
Alison P Alison P is offline
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And when your EMG comes out clean, BELIEVE IT!!!
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Old 11-02-2006, 10:39 AM #10
arrigoar arrigoar is offline
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I will believe it. I just have this thing in my mind that my neuro might have missed something on the exam. I question why he is even doing the EMG. He says it will ease my fears, but in the back of my mind, I am thinking that maybe he is doing it because he is not that certain with his dx of BFS.

Wouldn't he be able to find some abnormalities on the clinical exam of I indeed did have ALS?
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