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

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

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

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???

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

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!

Well ..my less dominant arm is stronger than my dominant one...I do things with my dominant and tend to carry heavier things in my less dominant..therefore my least dominant arm is stronger..I do not have ALS my husband does..
I'd again try to train using a heavier weight in the weaker arm..if you feel after awhile you are losing more strength go back to your doc,,,in the meantime try to avoid reading too much about ALS..see if the doc can prescribe something better for the anxiety...medications too may cause an off- feeling and some weakness,,,but they are often worth the side effects...Lisa
PS..A book feeling heavier in one arm means very little..if you were telling me however that in one arm you couldn't lift a book at all or struggling very hard to do so..then I'd be more concerned that something more serious than anxiety was going on physically ...as this would be an example of "profound weakness"

Thanks for the info guys. Just an update on me. I went to my GP again on Monday. He tested my reflexes and stated that they were a 2 (which is normal), tested my arm strength and could not detect any weakness. I am starting anti-anxiety medication (Lexapro), but he did say for me to keep my neuron appointment, just for added piece of mind.

My complaint to him was that I am having perceived weakness in my right arm and it feels different when I walk (sorta weird).

Don’t you think a GP would be able to pick up on some sort of weakness/reflex change, that would lead him to demand that you go to a neuron? Also, when I left the office, I flat out asked him if I had ALS. He said no.

Can I trust my GP, that the cause of my perceived arm weakness is anxiety/somatic?

Yes, you can trust your GP ...everything was normal...perceived weakness is not a sign of ALS..'profound " weakness may be or may be something else....you had no clinical signs of the disease ..Lisa

"Don’t you think a GP would be able to pick up on some sort of weakness/reflex change, that would lead him to demand that you go to a neuron?"

Sure. Unless there wasn't a real one, it just felt like there was.

So in other words. I can trust my GP...and will get some reassurance from my neuro that I don't have ***. Correct?

Correct!!!

My symptoms have been going on for about almost 2 months now. My main complaint is perceived weakness in my right arm, although I can still do everything, this just feel heavier.

If I had ALS, wouldn't I have seen some more progression?

Tony..
You said yourself that you are suffering from hypochondria....please seek counseling for this problem...
Paul, Jeff. Alison and I have tried to reassure you...but it does not seem to be sinking in...
I just really don't know what else we can say...please follow your doctors advice and please look into counseling to help get control of your fears..Lisa

I am on anti-depressants now. And I am taking klonopin until they kick in. The one thing that I am worry about is atrophy in my thumb pad (thenar muscle). I had my GP look at it and he said it is not atrophy. But I am still doubting him. If it was true atrophy, my thumb would be pretty weak wouldn't it? Especially after a month and a half?????? Also, my arm would be pretty weak too, correct?

Sorry, I am just really scared! Looking for some reassurance.

Neuro appointment next Friday.

Neuro Appt.
 

I had my neuro appt. on Friday. He did all the strength tests and reflex tests. He says I have BFS. He wants to do an EMG for piece of mind though, since I have been worrying about ALS.

Can I trust the neuro? I find myself second guessing him.

Maybe arrigar just needs to be a part of something and he stumbled on to ALS first.

Tony,
Over the years many people from the Neuromuscular forum at OBT..went through many of the "same " fears as you are having..but many came to realize they did not have ALS...some sought professional counseling...some had other "treatable " physical things going on...
You can look- up any symptom on the internet and it can fit almost anything..every headache is not a brain tumor..and every twitch is not ALS...self- diagnosing and second guessing your doctor is not a good idea...
My concern is even if you have an EMG...will it ease your mind? Or will you question that test as well ?
None of us here are docs, we can't see you,even if we could we are not qualiified to diagnos you...but everyone who has responded to this thread...has told you nothing you have mentioned "sounds" like ALS..
Please again consider seeking professional help for your anxiety problems...as living in constant fear...will destroy any happiness you have...let your doctors know how your "constant" fears are affecting your life...and see if they can refer you to a qualified counselor..Lisa

Lisa,

I am going to seek counseling for my health anxiety. I am just doubting my neuro, who said he is 99% sure I don't have ALS and said he thinks I have BFS. He ordered the EMG because he thinks it will be therapudic for me. To have some closure.

My question is...do you think deep in your heart, that I can trust my neuro? Is 99% as good as it gets?

I am getting an EMG next Thursday, and am worried he may have missed something.

Please provide some input...sorry to be a bother...just real scared!

Thanks,

Tony

Tony,
Please calm down and try to put things into perspective...
You passed a test on reflexes with flying colors performed by a qualified physician,you have no "profound " weakness, you are completely functional and can even lift weights...What do you honestly think your chances for having ALS are?
Sure there is a "chance " I could get struck by lightening today...but I'm not going to spend my day worry about it..as the odds are strongly in my favor that I will not...And even if I do get struck by lightening what good would worrying about it do ?
Do you really think any of us here are qualified to second guess your docs...and diagnos you over the internet?
I hope the EMG will give you closure ..all I can advise in the mean time is for you to remember the reason the doc ordered the EMG in the first place ....to give you piece of mind.. Lisa

I am trying so hard to believe my neuro Lisa. I am just so scared on a daily basis. He is a qualified neuro, who would definitely know if something drastic was wrong.

It is just so scary and hard to forget about worrying. As soon as I think I am okay...I start examining my body and create more doubt by finding subtle differences.

In your heart...do you think I am okay...based on all the information I have provided. GP visits, Neuro visit...all whom say I am okay. I am just scared that the EMG is going to pick up on something that the neuro missed.

Do you think that can happen?

Thanks for your help and support Lisa,

Tony

Tony,
You are fine...really, really fine.
Alison

Thanks Allison. Anyone else with any input into my situation?

Anyone else? I am really scared. I seem to not be able to trust my neuro. I am scared about the EMG next Thursday.

Horrible and dumb thing to do to waste your life worrying about a disease that you don't have. You will DIE someday. No doubt about it. Now you've wasted months of your short time here on Earth for nothing. Time lost. Time you will never have back. How much more do you want to blow?

I don't mean to waste time...I am just so scared. All the doctors have said no to ALS...but I can't trust them. I know the EMG is the gold standard and only got a 99% sure from the neuro. He found no weakness on the clinical exam...but still wants to do an EMG.

What if he missed something?

Tony,
Please look around this forum..look at the people who really do live with ALS...are their symptoms and challenges similar to yours.. not at all ...
I'm sorry you are frightened..but all the people here who really are affected by ALS ... are trying to find practical ways of coping with this disease...there is nothing we can help you cope with here...because you do not have symptoms ALS...
If you don't believe your docs...I don't know what to say..as nothing we have said seems to ease your mind at all...
Sorry to be so blunt...but please reread your own posts..and you will see that you answer your own questions... ALS is not the problem ...anxiety is..none of us here are mental health professionals...and are not capable of helping with anxiety ...please consider seeking a counsler as soon as possible ....in the meantime you might wish to look for an anxiety forum....Lisa

One final question Lisa and whomever,

Based on my neuro's dx of BFS and multiple visits to my GP...can I say with certainty that I do not have ALS?

Don't they usually spot something on the clinical exam that points one way or the other. My neuro is doing my EMG for piece of mind...at least that is what he told me.

Thanks in advance,

Tony

Get a grip, man!
 

He craves your attention Linda Lisa!
Get over yourself, arrigoar, find a date, go outside, have fun, pick a fight with a ufc fighter. Stay away from the computer for one month and you'll be cured! Your imagination is getting the best of you....

If you don't believe neurologists who have examined and tested you, why would you believe people you don't know who've never even seen you? No one--not even the world's leading expert on ALS--can tell you with 100% certainty that you don't have it. Or, for that matter, that you don't have pancreatic cancer or a brain tumor or won't die tomorrow in a car accident. That's just not the way life works.

Hypochondria is a very narcissistic condition. Stop focusing so much on yourself and turn your attention outward to another person or thing. Or just grow up. Sheesh.

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 :rolleyes:... 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

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.

And when your EMG comes out clean, BELIEVE IT!!!

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?

Yes,definitly! There you go answering your own questions again.

Thanks for the support. I am just so scared right now. Next Thursday can't come soon enough! (EMG scheduled then)

What was your response yesterday?

Anyone else with any input into my situation? I know I have health anxiety issues, but do any of you think I have ALS based on the information I have provided?

....no....