symptoms that wont go away

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sportsfan

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The past 4 months ive had twitches in my calves,feet neck,under my lower lip,occasional cramps in calf and thigh muscles.my calf muscles are much more defined and appear to have wasted which is where most of the twithes occur along with my feet.recently my legs feel heavy and my ankles are getting sore around the joint........my patella reflexes are slightly brisk. my left shoulder is getting weak, like i injured it all over agian. I went to my gp who performed some blood work on me and my cpk level showed mild inflammation and he has a nuero that sends out a tech to perform a ncv/emg test on you where the results are looked at by a nuero....at my gp s office. My emg stated normal results for innervated paraspinals and distal muscles in lower legs claimed i had mild to moderate carpal tunnel. i was relieved to see that emg was clean but my symptoms have only persisted and im worried that maybe the test missed something or it was done to soon in the process to pickup anything. Is there anyone here who had a clean emg with symptoms and have show up on a later emg and does als weakness something that is gradually noticed until its obviuos...i can feel changes in my body as im in tune with my body Is wasting due to als dents in your muscles or just a shrinking of the whole muscle and if i were wasting in my calf muscles wouldnt show up on emg. thankyou all in advance for taking time out of day to help people like myself with als concerns.
 

notme

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With visible muscle wasting--yes, something would have shown in the EMG. That being said--the EMG is only as good as the person who does the test.

The likelihood of ALS with a clear EMG is very slim. Honestly, if you haven't noticed any inability to use your limbs--try not to worry and just wait and see what happens.

if that's not a possibility with your mind for whatever reason--see a neuro that specializes in ALS and repeat the EMG. I'd think a good neuro was the place to start.

What did the doc say about the CK levels? Have they checked for obvious things like infections, deficiencies such as B-12?

We do tend to know our bodies--but when you start inspecting your body--you'll find things--believe me. Who said the reflexes were brisk? Honestly, a neuro should do a full neurological exam and go from there.

Remember--ALS is only diagnosed after all other possibilities are ruled out. Twitches don't mean ALS--usually by the time twitches start, you have visible muscle loss and definite weakness--at least I did.

Everyone twitches. Your CK test could simply mean something treatable is going on, though--so see if you can get it resolved. Remember, ALS is very rare--and the least likely thing to be wrong.
 

Lavender Lady

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A clean EMG means no ALS from what I have learned.
 

sportsfan

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hey notme im hoping you are right about it being a very slim possibility.My gp thinks that my cpk level could be because i workout with weights and exercise regularly but i havent done much in the last month.do you think that my emg results of carpal tunnel could ve been an early sign of als misdiagnosed and what in the world else could be causing this annoying twitching thats happening as i type.All my other bloodwork indicates im healthy as a horse.I m trying to be positive and i guess if it is als it will rear its ugly head sooner or later its been 4 months now.Lavender i ve heard of cases where people test negative only to test postive later on...thx for your replys.
 

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sportsfan,

If your EMG was normal for your legs -- where the twitching is concentrated -- then the twitching is not being caused by a lower motor neuron disorder, which would show up distinctly on an EMG, long before you would notice any other symptoms such as weakness or loss of muscle tone. No LMN problems == no ALS. It's that simple.

If the twitching in your legs isn't being caused by ALS, it's very unlikely that the twitches elsewhere in your body are being caused by ALS. Frequent and strenuous exercise frequently causes people to twitch after a workout, so you may want to see if the intensity of your twitching is related to the intensity of your workout schedule.

Finally, there is a website that has a lot of people who complain of many of the same symptoms that you do. It's called a b o u t B F S dot c o m. You should take a look over because they have a great support network and they understand your fears about ALS because they've been where you are now.

Good luck to you.
 

sportsfan

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thx trfogey, i will look into that website and i hope you are right and i guess only time will tell.I m gonna try to be positive and move on past these fears.susan i will pray for you in the hopes that your symptoms are being caused by something other than als, hang in there this is a great place for knowledge and support.alot of strong and supportive people on this forum.
 

sportsfan

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hey guys thx for your responses do ya ll think i might ve umn and thats why my emg didnt show anything, or does twitching and slight cramps point away from that just wondering.thx.
 

Alyoop

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I have UMN stuff. But it all started years ago with cramps, then weakness, and then 24/7 fasciculations. The fasciculations are benign and cramping stopped abruptly 2 years ago.

Just because you have fasciculations and cramping, it does not mean it's LMN unless it's proven by EMG or on clinical examination.

To have UMN " stuff" it needs to be diagnosed by a dr. You can't just say you UMN stuff. Now I have not read all your past posts, so maybe you have pathological reflexes, clonus, spasticity, weakness etc.
 

kmendsley

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Get your potassium checked...this should be my quote at the bottom. lol. But seriously sportsfan, potassium accounts for all symptoms you have. Too high or too low can be extremely dangerous and you will end up in the hospital. A simple blood test can check for this, just ask your general doc. for potassium check. If this isn't it, thyroid should also be checked and lyme disease- both blood tests as well, before thinking about ALS. Good luck to you.
 

sportsfan

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I ve had my blood work done and everything is in the normal range except my cpk level was elevated.so umn is clinically diagnosed by reflex tests,nuero exam etc.i ve done some of those tests myself.my patella reflex seems brisk but im no dr.babinski tests neagtive performed by a friend,negative hoffman tested at home and negative rohmberg as well just brisk knee jerks...that what makes me think maybe the emg might have missed it due to umn instead of lmn. thx. guys.
 

trfogey

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I ve had my blood work done and everything is in the normal range except my cpk level was elevated.so umn is clinically diagnosed by reflex tests,nuero exam etc.i ve done some of those tests myself.my patella reflex seems brisk but im no dr.babinski tests neagtive performed by a friend,negative hoffman tested at home and negative rohmberg as well just brisk knee jerks...that what makes me think maybe the emg might have missed it due to umn instead of lmn. thx. guys.
When did you graduate from medical school and where did you do your residency training?
 

Alyoop

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No way a non Dr can determine if your reflexes are brisk or not, hey even different Drs have differing opinions minutes apart. It's highly subjective. If your dr has not said that you have brisk reflexes then you probably don't. Assymetrical hypereflexia is more of a concern, as it's normal for some people, just as fasciculations are normal in some people.
Best not to test yourself. It causes no end of unnecessary worry. Toss the tape measures away, stop knocking your knees and go live while you can :)
 

notme

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I ve had my blood work done and everything is in the normal range except my cpk level was elevated.so umn is clinically diagnosed by reflex tests,nuero exam etc.i ve done some of those tests myself.my patella reflex seems brisk but im no dr.babinski tests neagtive performed by a friend,negative hoffman tested at home and negative rohmberg as well just brisk knee jerks...that what makes me think maybe the emg might have missed it due to umn instead of lmn. thx. guys.
Sporty, I gotta tell ya--you simply can NOT do reflexes on yourself. You wouldn't know brisk if it hit you in the head, hon. That's what a neurologist is for.

Your EMG showing no pathology in the lower legs where you're having symptoms, as several of us said--pretty much means ALS isn't the issue.

Carpal tunnel usually has associated symptoms--hand pain being a biggie. But not necessarily in mild stages.

UMN AND LMN both have clinical signs--spasticity, positive babinski, brisk reflexes, fasciculations, weakness, atrophy, loss of use

Your friend can't be doing the reflex tests, either. And honestly, if not done properly--you may seem to have no reflexes at all even.

Let me tell you a little story--I have UMN and LMN clinical signs as determined by a very good ALS specialist. Spasticity, fasciculations, major atrophy in my hands, CTS, and, here's the biggie: LOSS OF USE OF the affected part. I have hyper reflexes in my legs and absent or slight reflexes in my arms.

There is a difference between what we feel as being weak--and falling down the stairs because of foot drop. There's a difference between a hand feeling weak--and not being able to push a can of hair spray with good ole index finger. The symptoms are just too obvious to be ignored by that point.

I feel weak all the time--I fall all the time--and there is still a good possibility even with ALL these issues that say "ALS" that I don't have ALS. I fit a crap load of the symptoms and signs. But there are a TON of things that mimic ALS.

If you do in fact have brisk reflexes and increased tone in your legs--but still feel weak in them--that they might consider MS. If muscle weakness gets better, it could be something else. See where I'm going here?

CLEAN EMG in a limb that has the signs you have MEAN NO ALS. The EMG would have shown SOME abnormality in a limb that seems to have lost muscle and continually twitching.

Of course mistakes happen and ALS is misdiagnosed as other things--but what really points to ALS beyond all the signs and symptoms in the world is progressive weakness and atrophy.

Spend some time researching some of the treatable things: MS, MG, MMN, CIDP --and those are just a few.

Can I say for absolute certainty you don't have ALS? Unfortunately, no. But I can feel pretty confident saying it's very unlikely with a clean EMG.

If the doc had noticed brisk reflexes and you showed other clinical signs of LMN AND UMN, they'd have done an EMG in MANY regions. Not just the legs and arms. If it had been "iffy" they'd have told you to come back and be retested in 3-6 months most likely.

To ally your own fears--if we can't make you with our comments--please see an ALS neuro and put the question to rest once and for all. Honestly, I wouldn't trust an EMG not done by a neurologist who knows ALS when he/she sees it. But--you have a lot of symptoms that just don't sound like ALS.

Your 4 months of twitching all over even leads away from ALS. With that much twitching all over for that long--there would be some very obvious muscle loss (you wouldn't have any doubt, believe me....real muscle loss is very obvious)

Does that help? Or are you still convinced they were wrong?
 
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