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Relax

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A year ago I was 39 hrs old and in perfect health -twitching started first 7 months ago in hand then arms then legs then all over. Then extreme muscle soreness and as of last 3 months muscle weakness - a bag of groceries makes my arms tremble and fatigue quickly an last year I would run the stairs at work and now one flight burns my legs up - as of 2 months ago pain in base of neck and throat but can still eat fine with no aspiration- just painful now- had abnormal emg and long exercise test - local neuro doc says I probably have hyperkalemic periodic paralysis and put me on diamox - not really helping - I have told him that I don't have any periods of weakness or paralysis just constant muscle pain, twitching and jerking and muscle weakness everywhere - trying to get into mayo clinic or somewhere for second opinion but on waiting list - can someone give me some insight? My doc says not ALS
 

notme

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Couple of questions:

You said EMG was abnormal. What was abnormal?

Pain is not a general presentation with ALS (Other than UMN--and that's from spasticity).

Twitching, as I hope you read in the sticky posts--is also not a presenting issue. The twitching in ALS is from the nerves trying to compensate--and generally, by the time there fasciculations, there is marked loss of use (at least mine were--I didn't even see them--the neuro pointed them out)

Weakness and intolerance are different things. When I say "weak" in me, for instance, it's something I just can't do any longer--in my case again, I can't use a portion of my arm--the muscle is gone and the hand is mostly dead. My first symptom was noticing I couldn't push the buttons to unlock my car door, or all things. The doc was immediately concerned as I had a history of stroke, which was ruled out--and i was pretty much ignored until the muscle wasted over the next several months. But that's just me--and I am NOT diagnosed yet (after a year and a half)

What as abnormal in your lung test (I'm assuming "long" was a typo for lung) Do you have asmtha? COPD? Do you smoke?

We have a member here that is very good with EMG interpretation--there are certain things seen on EMG in ALS--but there really is no definitive 'test' for it.

In UMN dominant ALS, there are clinical signs that the neuro is just not going to miss. Hyper reflexes, positive babinski--things like that--and ultimately, spasticity.

If you're not happy with your diagnosis at present, seek a second opinion. Generally, muscle fatigue that improves with rest is seen in Myesthenia Gravis, and there are blood tests for that condition.

In ALS--things start to get weak, then rather quickly progress to atrophy. If you have no atrophy after nearly 7 months, or loss of use, I'd consider those good signs that the ultimate diagnosis is something other than ALS.

With Lung Issues for 7 months, you'd likely be on bipap by this point.

HOpe that helps.
 

arwaxru

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What was the abnormality on your EMG? Weakness in ALS does not come and go. Muscle soreness is usually NOT an early symptom of ALS. This doesn’t sound like ALS. You need to be confident of the diagnosis that you were given and I hope that a second opinion confirms the first one.
 

Zaphoon

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The doctor diagnosed you with periodic paralysis because that is what he believes your condition warranted. In fact, he believed it so thoroughly that he subsequently went on to prescribe the appropriate medication to help you.

He must have been pretty convinced to have taken such action.

I'd like to have this diagnosis!
 

trfogey

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If your doctor says it's not ALS, you have two reasonable choices -- believe him or get a second opinion from another doctor. Unfortunately, you've selected the worst possible course of action which is to think that you and your Internet connection are somehow more knowledgeable than a doctor who's had many years of training and experience.

Here's my insight for you. You will get worse the longer you stay here and read stories written by the thousands of other people who came here without an ALS diagnosis, made a few posts, and disappeared into the void from which they came. You don't need to be here -- you chose to come here, in spite of or in defiance of your doctor's advice that you don't have ALS.

You can choose to leave here and learn more about what you have been diagnosed with. It would reasonable for you to go back to the doctor that diagnosed you and let him/her know that you don't seem to be getting any relief from the medication you were prescribed, so that your doctor could perhaps adjust your medication. You would, in fact, be well-served to learn a lot about the problem causing your periodic paralysis just so you can avoid some of the scary things that can happen with it. Did you know, for example, that 25 percent of patients with your condition don't respond to Diamox and need to be put on other medications?

You have the choice. Choose well.
 

HelenL

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One question: have you been checked for Lyme disease?
 

notme

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She hasn't been "diagnosed" she was told "probably". Personally, I wouldn't be content with "probably" either. And trfogey is right--your doctor needs to be told you seem to be getting no benefit from the medication prescribed. This forum isn't going to be able to provide anything much on this condition--as it's not one of the things generally suspected with ALS. There ARE a lot of differentials for periodic paralysis--so I have to assume that your doctor did do the testing to rule those other conditions out.

To the original poster--HOW did he diagnose that condition? There are specific lab findings found (even EKG findings normally). My question to him, if he didn't explain it--is WHAT led to that diagnosis. Anyone is entitled to a second opinion--but it needs to come from a doctor--not the internet, unfortunately.

The periodic paralysis place on the internet doesn't help one newly diagnosed a lot--there is little information there for her to read.

And, when I say I disagree with the two people, I don't mean that I think you have ALS--but I think with your pain issues, perhaps you'll be more content with a second opinion.

Luckily, your symptoms, with the pain issues, don't sound much like ALS---which is a good thing!
 

trfogey

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The periodic paralysis place on the internet doesn't help one newly diagnosed a lot--there is little information there for her to read.

Personally, I found this site about periodic paralysis very informative, especially for the newbies.

Periodic Paralysis News Desk - Table of Contents

Same site as the first result that I got from a G o o g l e search for "periodic paralysis", just one step up in the Website structure. But what do I know about searching the Web? :roll:

As I said, a very scary disease. Not one to be trifled with, for sure. And not one that a neuro is likely to toss out there off the cuff either.
 

Relax

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ok, doc said i have muscle channelopathy that is MOST LIKELY hyperkalemic periodic paralysis. Abnormal long exercise test with faciliation followed by a slow decline in CMAP to around 75% of initial CMAP amplitude.. EKG was ok. This was 2 months ago and I'm going in for a follow up tomorrow. Since then I have a had a constant headache towards the rear for 4 weeks and have instant trembling and muscle fatigue when muscles put under the slightest strain like squating down. Face trembles when I smile. Also, if the phone rings or anything like that my senes are like on overdrive and I am hypersensitive to the degree it makes me jump - never did I have this before. Muscle weakness continues to decline as carrying groceries or a couple of books casues fatigue quickly. Lifting something moderately heavy like I could a year ago is out of the question. My muscles ache so bad I feel like the pain is not worth being awake sometimes. Still not a single episode of any paralysis? Any thoughts? Thank you to all.
 

BLPhill

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Sounds like your startle response is in overdrive. How are your reflexes?
 

trfogey

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Any thoughts? Thank you to all.

Sounds nothing like ALS.

Why are you continuing to ask us about problems related to a diagnosis that has no relation to motor neuron disease whatsoever? You should be asking your doctors these questions.
 

notme

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I'd suggest you write a list of ALL your symptoms and ALL your questions and take them with you to your appointment when you go. The site trfogey gave you has a lot of information. Go armed.

Thankfully, it's not ALS--there are very specific findings on the EMG with ALS and yours showed a completely different disease that no one here can really help you with.

You can always ask for a second opinion if you feel it's warranted, too. Also, some medications take time to show positive results. ALS can be hard to diagnose--but remember, it's only even ever diagnosed after everything else is ruled out--your symptoms are obviously something--but not something that an ALS forum member will be of much help with.

I do wish you the best.
 

AndyDJX

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ok, doc said i have muscle channelopathy that is MOST LIKELY hyperkalemic periodic paralysis. Abnormal long exercise test with faciliation followed by a slow decline in CMAP to around 75% of initial CMAP amplitude.. EKG was ok. This was 2 months ago and I'm going in for a follow up tomorrow. Since then I have a had a constant headache towards the rear for 4 weeks and have instant trembling and muscle fatigue when muscles put under the slightest strain like squating down. Face trembles when I smile. Also, if the phone rings or anything like that my senes are like on overdrive and I am hypersensitive to the degree it makes me jump - never did I have this before. Muscle weakness continues to decline as carrying groceries or a couple of books casues fatigue quickly. Lifting something moderately heavy like I could a year ago is out of the question. My muscles ache so bad I feel like the pain is not worth being awake sometimes. Still not a single episode of any paralysis? Any thoughts? Thank you to all.

how did you appointment go?

You and I share some things in common, namely the face trembling when smiling, the muscle fatigue and shakiness after carrying things like groceries, the muscle soreness, the twitching and the jerks.

I also have an issue with headaches (I get migraines) and I had a period of time where I had a lot of pain in the base of my neck/throat. I don't know if that has any relation to the neuromuscular issues I'm having.
 

dian_na

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hmm thats interesting, reminds me of Anderson's Syndrome, did you have ADD or ADHD as a kid? But Dale alas trfroggy is right this isn't the place for you. You need a forum that is perhaps like restless leg syndrome, fibromyalgia, sorry I am the world worse at spelling but the drift is this.
 
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