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mcdillydog

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Learn about ALS
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Hello,

I am new to the forum and I do not know all the technical terms for ALS tests and rules of the forum yet but I wanted to share my test results with you and see what you think.

I have been having twitches in my left foot on top and bottom, calf, shin, around the knee, thigh and quads. My left hand also has twitches especially between the thumb and pointing finger. I was refer to a Neurologist and we did several tests today with mixed results. I do not have copies of the test results yet so forgive my non-medical ramble below.

The doctor said my reflex tests were normal. My strength was good. However my EMG shows diffuse mild denervation on my left arm and leg. He said there are two "wave forms" that may prove you have ALS and that neither of those forms were present in my EMG. He said we may have caught the disease early and that they will appear in later tests. He also said my twitches (fasciculations) were about as bad as he has seen. He also did some nerve velocity tests (I think that is what it is called) and my Sural nerve is suffering from a sensory delay. He told me that although most literature says sensory nerves are not impacted by ALS, new research shows that this nerve is in fact impacted. I found some articles on the internet that support this Sural Nerve and ALS link. He also did blood tests which will be back in a few weeks. I asked the doctor if he thought I had ALS and he said we need to run the MRI and blood tests before he gives me a diagnosis. He said that my test results do not all point to ALS so not to worry until they do.

I am worried anyway.

David aka Mcdillydog
 
Who mentioned ALS? You or the doc?

Have you felt any symptom at all besides fasciculations? If not, I would think it irresponsible for the neuro to mention ALS with only twitching and a sensory nerve delay.
 
Hi David,

Sorry to here about your frustration. I want to tell with ALS you DO NOT have normal reflexes. Is your nuero a nueromuscular
specialist or just a general nuero. Do you have weakness on the side he said you have mild denervation. Please get a copy of your emg
and post it on the forum. Also an emg is as good as the dr doing it. There are so many things that can mimic ALS and need to be ruled out. I agree with KTMJ that this nuero was being irresponsible even saying that to you.

How long have you had your symptoms?
 
I have had fasciculations for several months in my left foot and leg. The left hand has been impacted in the last month. I feel weaker in my left hand and leg but the doctor said I felt very strong to him.

The doctor brought up ALS - not me - for three reasons.

1.) The EMG shows diffuse mild denervation in legs, arms, feet and hands.
2.) The Sural Nerve has a delay and recent articles link that directly to ALS if diffuse denervation exists in combination with the last reason.
3.) Fasciculations

I guess his understanding of recent research says the combination of all three is highly indicative of ALS but not entirely conclusive because the EMG did not show certain other problems existed that are more indicative of ALS than mild denervation alone.

He did say we need to complete a battery of other tests and not to worry until they were complete.
 
My neuro is a general neuro but said he will refer me to an ALS specialist for a second opinion after he has completed his tests. His tests should be done in a couple of weeks.
 
Certainly take him up on the offer of going to a neuromuscular specialist. A general neuro is necessary, but the specialist has seen a lot more stuff, and much of it treatable. I know the waiting game is tough - hang in there and listen to the docs.

wright might be able to give you a little more information on the EMG/NCV comments, but fascics and denervation of themselves do not mean ALS, especially with the sensory nerve issue that showed up.

God bless...
 
Hey David

I have read the study your neuro is referring to . . . and it was only a small percentage of PALS that had any type of sensory sural nerve problem. He has completely misinterpreted that study if he says that denervation along with sural nerve problems points to ALS. Tell him to go read it again!

It was completely irresponsible for your neuro to even suggest ALS. Please do your best to relax and let the experts in the field (i.e. ALS specialist) evaluate you before you go thinking the worse.

P.S.

If you can get a hold of your EMG and post the results on here (raw data), I'd be happy to look it over for you.
 
Thank you Wright. I will get the results and share them as soon as possible.

On a related note, the doctor said that there were (I am not quoting the doctor correctly but it is the best I can do with the medical terms) two "wave forms" that can show ALS in an EMG and that neither wave form appeared in my results. What is he talking about and what does it mean if they do appear in the test.

Thanks,

David
 
Mcdillydog

Are the twitches in your feet/calves/thighs constant non stop? Did they start all at the same time? How long after the twitches do you wait to have an emg? Sorry for so many questions but this would help me.
 
Yes - they constant and non-stop. They all began around the same time. Sometimes the ticks are not as strong as others - meaning I can see the fasciculations but not feel them then other times - often at night - they are much stronger where I can see and feel them. The ones in my hand came a little later and are not always constant for 24 hours but I would say 8 hours a day. I have waited a little over a month from onset to get the EMG.

From speaking to mom I have learned that my Dad's Uncle died of ALS.


David
 
ok so what does this mean? as Wright says i am not medically qualified to understand things like this.

Does this mean that muscle pain is actually s symptoms of ALS? Because i have really bad muscle pain in my calfs that always twitch

Chris
 
Well there you go again, Ptich, self diagnosing yourself with something you don't have . . . BECAUSE THERE ISN'T ONE SHRED OF EVIDENCE YOU DO . . . but I guess your vast medical knowledge trumps all of the neuro's you have seen.

From what I recall, you have had two clean EMG's (therefore no LMN involvement) and clinical exams that showed no UMN involvement. Hmmm, I haven't read El Eschorial criteria in a while, but from what I recall (and I have a pretty good memory), you need LMN and UMN involvement for an ALS diagnosis. Is there something you read that I missed?

Time and time again you misinterpret studies, data, make statements that are completely wrong, etc., etc. but I keep letting it go . . . but not this time, because that irresponsible statement you just made affects people on here that are already worried.

I am sooooooooooooooooo SICK AND TIRED of people coming on here and telling everyone they have ALS when they haven't been diagnosed and have no evidence they do.

Congratulations on causing worry on this board for no apparent reason other than selfish ones. Are you that desperate for attention?

One other thing:

The number of people in those studies (I read each and every one of them and not just some abstract that is on the web) was not big enough to form any conclusions. Furthermore, the majority of people with sural nerve involvement showed no clinical signs of it. The sural nerve involvement can be due to so many things, including being sedentary and causing lack of blood flow to the nerves, which would then cause them to be affected. There are a number of other theories as well. As of right now, there is no definitive correlation, so enough with the speculative rhetoric.


Chris

Sorry you got a panic out of this thread, but you have been examined thoroughly by a very competent neuro and have gotten the all clear. Your symptoms are not indicative of ALS and your clean EMG and clinical exam support that conclusion. Please relax.
 
Hi guys, I have to say it again a CLEAN NEURO EXAM AND A CLEAN EMG.. NO ALS... Like Wright said come on...the nerve involvement can come from a cold room, can be that simple.
Hope floats, muscle sinks...
 
Wow. I hope I have not caused trouble by starting this post. It was not my intention. I was just trying to understand my own EMG results better.

David
 
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