Old 04-03-2011, 10:58 PM #1 (permalink)
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Default Question-Worried.Need advice.

Hello everyone,

I have been reading this forum for about a month now and i would like some opinions.

I am a 32 year old male and I am currently thinking I might have ALS and cannot get it out of my head. It started with occasional muscle numbness and tingling with both hands and weakness in my legs and some fasiculations. When i try to work out my muscles get sore after and take a longer time for me to recover. Sometimes when i take a deep breathe my right shoulder blade or the right side of my neck hurts. after 2 weeks of onset I went to a neurologist on March 10th. They did an ncv of my hands and elbow and found what they diagnosed as motor nerver conductions studies reveal mild moderate prolongation of right left median distal motor latenceys(at the wrists), F wave studies of bilateral median and ulnar nerves are within normal limits, sensory nerve conduction studies reveal mild right median conductiion velocity slowing.. They did a needle EMG of my hands my right tricep and my c7 and c8 left and right paraspinal. Needle electromypgrahpy of the arms and cervical paraspinal musculature is normal. No evidence of ulnar neuropathy or lower cervical radiculopathy.

Evidence supports Carpal tunnel Syndrome.

The Neurologist team also did an emg on my legs which stated that all f wave latencies were within normal limits, evalutation of left peroneal motor the left tibial motor and left sural sensory nevers were unremarkable. All examined muscles showed no evidence of electronic instability(they did a total of 8 leg muscles). there is no evidence for lumbosacral radiculpathy or motor neuronpathy.

My concern is that I have continued weakness in my legs and fasicualtions throughout my body 3 weeks later. Could the EMG have missed something? was the EMG thorough enough? lately i feel my throat tightning ,my face has been twitching as well occasionaly and I have had some difficulty swallowing. Three days ago I was talking to a friend and when I turned I felt a pull in my neck muscle,a pain in the back of my neck and it jerked my jaw down for a quick second; the next morning Iwoke up with a very bad headache and now Iam congested. I have went to two other neuromusular specialists in NYC and both have done physical examinations and have said my strength is fine and they see no sign of ALS.

I also had an MRI of my cervical spine which ruled out MS

The symptoms i have feel like they are getting worse would the EMG i had show early signs of ALS or Bulbar onset? Do you think they tested enough parts of the body to diagnos properly. I noticed they did not test the shoulders at all which is a part that is bothering me as well.

Can anyone give advice?

should i get another EMG?

Thank you for the insight.
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Old 04-04-2011, 12:14 AM #2 (permalink)
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Default Re: Question-Worried.Need advice.

What type of advice can we give you that your doctors haven't already given you? Other than to see your primary care provider to look into some assistance to help you deal with the anxiety you are feeling?

You might also mention the neck muscle incident to your doctors too. There are some medications that can help with muscle spasms and fasciculations.
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Old 04-04-2011, 01:11 AM #3 (permalink)
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Default Re: Question-Worried.Need advice.

You have had an extensive EMG and 3 consultations all proving that you do not have ALS. It is doubtful that the EMG would have missed something. I think you really need to listen to the 3 experts.
It's important not to attribute every ache, pain and unusual feeling to 1 thing. You will fuel your anxiety, as many posting on here do.
Why think that a sore neck, headache, congestion etc are all linked.
It may be that you wrenched your neck, woke up with a headache and have a virus?
Follow your Doctors advice, and should things change dramatically, then seek advice from your primary carer.
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Old 04-04-2011, 10:02 PM #4 (permalink)
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Default Re: Question-Worried.Need advice.

Thank you for the replies,

I am just concerned that i got the EMG too early and it wouldnt detect the abnormalities.

You are all very kind on this forum, and i appreciate it.
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Old 04-06-2011, 02:42 AM #5 (permalink)
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Default Re: Question-Worried.Need advice.

HI

The only thing I can add is that a cervical MRI can NOT rule out MS. I'd think one neuro could be wrong--I doubt that three would be, though.
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Old 04-10-2011, 06:27 PM #6 (permalink)
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Default Re: Question-Worried.Need advice.

The Neuro also said i had hyper active reflexes i had a positive on the hoffman reflex and something about + clonus.. I am still worried, although he said because the EMG came back normal and my blood work up came back ok i shouldn't be concerned.. but my twiching still wont stop in my bicep( and it is hurting) and triceps .. do you think it would matter if the emg wasnt done in specific area where the fasiculations where happening..? Is it possible the EMG was done too Early because as of now my syptoms are getting worse where i have a lot of fasicualtions in my calves and my legs are really starting to hurt as well.


Thank you all for your replys it is truly appreciated.

One other thing i am someone who never goes to the doctor so i am not usually like this.
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Old 04-10-2011, 10:33 PM #7 (permalink)
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Default Re: Question-Worried.Need advice.

An EMG will often pick up a problem before it's symptomatic, so no it's not too soon. People ask that question every week. Faciculations are not painful, so I am not sure why you have pain! If you have hypereflexia and clonus then they are UMN signs. The hoffmans sign is unreliable and only really done in USA.

You have had such a thorough work up, but if you continue to have problems, why not wait 3-6 months and go back?
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Old 04-11-2011, 01:35 AM #8 (permalink)
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Default Re: Question-Worried.Need advice.

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Originally Posted by nyc15 View Post
The Neuro also said i had hyper active reflexes i had a positive on the hoffman reflex and something about + clonus.. I am still worried, although he said because the EMG came back normal and my blood work up came back ok i shouldn't be concerned.. but my twiching still wont stop in my bicep( and it is hurting) and triceps .. do you think it would matter if the emg wasnt done in specific area where the fasiculations where happening..? Is it possible the EMG was done too Early because as of now my syptoms are getting worse where i have a lot of fasicualtions in my calves and my legs are really starting to hurt as well.
You should be directing these questions to your doctors. They have examined you and they have the results of all the tests that have been done on you. That puts them in a position to know what might be wrong with you now and to prescribe any medications you might need to get through what's going on with you.

If you are foolish enough to continue to avoid doctors at this point, it's difficult not to see this as you contributing to your own problems, don't you think? Go to the doctor, so he can determine if anything has changed with you, and then do what he tells you to do.

And concerning your question about EMGs, I have a question for you -- what was the EMG too early to show? What is it you think it should have shown? It showed certain aspects about the condition of your nervous system as of about a month ago, which is what it's supposed to show. The combined NCV/EMG results showed that you have carpal tunnel syndrome in your hands and wrists. The fact that the rest of the findings of the NCV/EMG were normal just means that whatever is causing your twitching and muscle pain doesn't show up on the EMG, which eliminates some things from the large list of possible causes.

Since you like to avoid doctors and play around with medical sites on the Internet, I have something for you to look up. It's called benign fasciculation syndrome, or BFS. There's also a related condition called benign cramp-fasciculation syndrome, or BCFS. You'll find either of those to be a better fit for your symptoms than motor neuron diseases.

How often are you trying to work out and what would a normal workout be? And what do you mean when you say you have weakness in your legs?
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Old 04-11-2011, 02:50 AM #9 (permalink)
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Default Re: Question-Worried.Need advice.

HI

As someone that has been dealing with multiple medical issues for ten years, here's a few things to think about.

I used to think I was feeling weak--now, my definition of weak is the fact that I literally can NOT push the button on a can of hair spray.
It's normal to have sore muscles when you exercise, too. As you get older, you'll notice more aches and pains.
The MRI of your cervical spine can ONLY rule out a problem in your cervical spine . MS is a diagnosis that can take years to diagnose--and there are multiple tests for it--an EMG is not one of them.

Usually, the damage is done before you have symptoms--so, no, it's really unlikely you had an EMG too soon. You're also pretty young for ALS, if that's any consolation.

Please, take the word of three specialists. If it had been a GP that said "No way it's ALS" then I'd suggest a neuro--but you've seen the neuro.

If your symptoms progress--as in genuine weakness, or falls, or choking on your food, or slurred speech that someone ELSE notices--then by all means, yes, go see another neuro.

chest congestion isn't from ALS. A pulled neck muscle isn't either. Pulled muscles can be extremely painful--heat and ice help. Pulled muscles as we age are very common.

Try not to worry--I understand it's hard not to when strange things are going on with our bodies--but you've done what you can at this point. Be re-checked in symptoms progress.

Feel better.
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Old 04-11-2011, 01:13 PM #10 (permalink)
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Default Re: Question-Worried.Need advice.

Once again, thank you for all the replys,

Like i said before in my 32 years this is the 1st time i have ever been to a specialist for anything.... i guess what really scares me is the hypereflexia and clonus, that is why i am thinking there is something wrong and now what this fasiculations getting more intense i am a little unsettled.

My leg weakness is when i stand for a period of time they become painful and they start to hurt when i am at rest that's when they start to twitch. i can still walk but when i wake up in the morning they are very stiff and my arms are starting to have more pain.

I appreciate everyone support on this forum i really do. i am not trying to waste anyone's time but this is the first time i have experienced anything like this before and it is getting me very nervous.

Thank you again.
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Old 04-11-2011, 02:37 PM #11 (permalink)
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Default Re: Question-Worried.Need advice.

your leg "weakness" isnt weakness. you said it yourself. its pain and stiffness. that is different than weakness. when you cannot do something- then it may be weakness. not when it hurts to do something. do you see the difference?

I agree with trfogey. get to a doctor. we can suggest things til we are blue in the face but if you dont go to a doctor, then its all pointless.
Good luck with it all.
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Old 04-11-2011, 04:40 PM #12 (permalink)
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Default Re: Question-Worried.Need advice.

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Like i said before in my 32 years this is the 1st time i have ever been to a specialist for anything.... i guess what really scares me is the hypereflexia and clonus, that is why i am thinking there is something wrong and now what this fasiculations getting more intense i am a little unsettled.
Are all of your doctors worried about your hyperreflexia and your clonus? Have they suggested any type of followup care for you?

The problem with going to the Internet and second-guessing your doctors is that you don't have the training to interpret the observations that the doctors made and apply them in the proper context -- the living patient that they had in front of them. You just looked up the words you didn't understand and assumed that they were symptoms of what is wrong with you, when those conditions could be just as "normal" for the pretwitch you as the color of your eyes or the length of your inseam. The doctors know that and that's why they do other tests to see if a disease process is at work.

Until you looked them up on the Internet, hyperreflexia and clonus meant nothing to you, mostly because you didn't know you have them. I would strongly suggest that you return to that state of mind.

I would also strongly recommend again that that you look up and read about BFS and BCFS. They really are a better fit for your symptoms than ALS, and there is a very good support forum for them at A b o u t B F S dot c o m.
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Old 04-11-2011, 10:02 PM #13 (permalink)
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Default Re: Question-Worried.Need advice.

Hon, I really do understand being concerned when things are going on with your body--but today we have a sue-happy society. Doctors are more likely to order extensive testing because they don't want to be sued. If the hyper reflexes didn't prompt the doctor to say "come back in x months" and that you have carpal tunnel--then say "Thanks God" and let it go.

Muscle pain is NORMAL after exercise. As someone else said, ask the neuro about BFS. If you're concerned about MS, see an MS specialist--because an EMG/NCV can't diagnose it.

If you are truly concerned--wait and see if things progress. The thing to remember with ALS is that your condition won't be affected if not disgnosed today or tomorrow. ALS isn't really treatable--so, go enjoy what you have now. If you're worse and having true weakness or bulbar symptoms down the road, get retested by an ALS specialist if that will take the worry away for you.

Feel better. For the morning stiffness, try hot showers. Maybe you're developing fibromyalgia--it's common to have muscle pain and stiffness with it--I've had it for over 20 years.
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Old 04-20-2011, 07:43 PM #14 (permalink)
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Default Re: Question-Worried.Need advice.

I just want to thank you for all the help and assistance everyone gave me on this board it is truly appreciated.

My neuro recently did a Tongue Needle test and a facial nerve test which came back within normal limits.Which put me a little at east with the bulbar possibility.


Still no reason why the twitches happen and the overall fatigue i have , but i am taking all of your advice and just enjoying my life right now


I will update my story if anything changes.

I cannot express my gratitude to everyone on this board for listening and helping me out it is truly appreciated.
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