Old 06-09-2010, 01:55 PM #1 (permalink)
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Unhappy Is this ALS?

I have left calf atrophy 1 inch, weakness, broken hand, broken nose and two differing neuros. One, a month ago found denervation1+S1paraspinals diagnosedradiculopathy.
The other found last week denervation in left gastroc only 2+. they both only checked atrophied leg (different muscles. Second one found many fibs. The only difference is the second one put my leg in warm water before the test. Dxtibial neuropathy. Not ALS because FOCUL(gastroc)atrophy. I am really confused.Can anyone relate?I will probably never get a diagnosed that is accurate because I am a 20 yr cancer survivor and have been radiated to the hilt.
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Old 06-09-2010, 02:41 PM #2 (permalink)
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Default Re: Is this ALS?

Hi Charlotte,

I can't comment on your question, but saw in your post on PLS section that your broken hand and nose were a result of falls. How awful, and I hope you find some answers soon. I have had 3 falls now with only a bruised shoulder and ego to show for it (knock on wood).

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Old 06-09-2010, 02:45 PM #3 (permalink)
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Default Re: Is this ALS?

Hey Charlotte--

I'm also a cancer survivor who's having trouble getting answers from the doctors.

Could you also explain what you mean by "FOCUL(gastroc)" atrophy? I have atrophy as well, but it's in my right hand, and possibly left foot.

I had a lot of radiation to my mid section when I was 12; I'm 28 now.

How long have you been having these problems?

Talk to you soon,

Andy
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Old 06-09-2010, 03:29 PM #4 (permalink)
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Default Re: Is this ALS?

Hi Andy,

I'm an RN and read a lot, maybe misconstrue things sometimes. My understanding is that the protocol for diagnosed ALS is very rigid, such as you must have a certain number of upper motor neuron deviations as well as lower motor neuron deviations in order to get a confirmational diagnosed of ALS. In addition, you cannot have any other reason that might cause those deviations. There are many to list, but radiation therapy is one of them.So,
right there, even if I had all the signs, symptoms, emgncs in line with ALS, there is still doubt that radiation did not cause this all and docs are always going to be overly cautious about handing out a terminal diagnosed(although it does happen)when it might not be.
Have you had an EMG? Focal Atrophy in my case is just the gastrocnemius muscle denervation.This particular neuro says all my muscles would be denervating if I had ALS,
so I guess he is referring to a clinical diagnosed.You are so young to have ALS, but then we were both young to have cancer. I really had no choice about the radiation, but it does havok on your whole body.What are the docs telling you and what are your symptoms?
I'm now thinking about having chelation therapy.
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Old 06-10-2010, 02:28 PM #5 (permalink)
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Default Re: Is this ALS?

Hi Charlotte--

You're right; the "radiation factor" in both of our cases could make the doctors hesitant to diagnose ALS with our unique variable, however, it could very well be that the long term side effects of radiation is the thing that's causing our problem, not ALS. Now, on one hand, I guess it doesn't matter if you call it ALS or you call it "radiation side effects," if the result is the same.

But on the other hand, we don't know that the result is the same. I have atrophy, a massive amount of widespread muscle twitches, foot scraping, muscle fatigue, muscle pain and a lot of weakness after exertion. But I can still function generally fine. It may get worse, but we can't assume that it's the same as ALS because it isn't ALS. It may not progress to the point that it's life threatening, and it may not affect all muscles.

I have had 3 EMGs, and they have been mostly clean, though they found reduced conduction in the nerves on my left arm. My doctors are saying "not ALS" and I believe them. Heck, they're the experts. I know doctors are fallible, but I've seen three different neuros. That's at least a combined 12 years more medical school training than I have.

My PCP specializes in survivors of child hood cancer, and she says there's a lot they don't know. It sucks because she shrugs her shoulders a lot, but I liker her because she's honest. Three decades ago, childhood cancer was usually fatal, so they had no idea what the long term effects of treatment were. Thankfully, we're lucky enough to have beaten cancer, but this phenomenon of "survivors" is fairly new.

I had never even heard of cheleation therapy! Please keep us all posted to how you're doing.

Best,

Andy
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Old 06-11-2010, 10:43 AM #6 (permalink)
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Default Re: Is this ALS?

Andy,
If it is radiation toxicity, chelation will help. You are lucky you seem to be doing so well. I have sunk into depression after I fell an broke my once perfect nose. Oh well, no place for vanity anymore in my life. Thanks for your great response. Glad your EMG was almost perfect.
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Old 06-11-2010, 12:22 PM #7 (permalink)
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Default Re: Is this ALS?

please excuse me off subject, dear Charlotte - I cannot help you as I have no expertise in what you are asking - but are you descended frol THE Charlotte Corday?
Much love - and I DO hope you get some answers soon
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Old 06-11-2010, 12:31 PM #8 (permalink)
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Default Re: Is this ALS?

Hi, and how astute are you. I am a direct descendant of hers. I wear a lavelier that belonged to my grandmother, named Ruth Corday, her sister was named after Charlotte.
Tell me what is your interest and how were you finally diagnosed,how has life been for you?
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Old 06-11-2010, 02:05 PM #9 (permalink)
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Default Re: Is this ALS?

Hello Charlotte

I got your public message but I thought I'd reply to you here.

Given that they only found denervation in your calf muscle (as well as muscle atrophy) and given that they found denervationn in the paraspinals that would be consistent with the nerve that innervates your calf muscle . . . in my opinion . . . you have a radiculopathy as your neuro's have said. It would explain the signs and symptoms that you have presented to us.

Obviously you don't have any other denervation of any other muscles (you would have told us) and your clinical exam must have been relatively clean as well (I assume that because they didn't EMG any other part of your body), so that means you don't meet the criteria for ALS . . . it's not even close.

I'm a bit confused as to why you're questioning your neuro's. Can you explain why?
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Old 06-11-2010, 04:18 PM #10 (permalink)
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Default Re: Is this ALS?

I am an RN and my neuros have had differing opinions. I also read if someone is suspected to have ALS, don't tell them until it is absolutely clear by the emg and clinical exam. They only EMG'd my left leg,and with S1 radiculopathy you usually present with sciatica I think. Anyway, the two diagnosed that are considered acceptable(until certainty of ALS)happen to be neuropathy and radiculopathy. Do you think you can rule out ALS with an
EMGncs of one leg? Research shows if someone has ALS,90% of the time, the EMG will
show it in the arms. So now, what do you say to that?
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Old 06-11-2010, 05:48 PM #11 (permalink)
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Default Re: Is this ALS?

What do I say to that? I could say a lot, but I'll keep this as short as possible.

You state that: "If someone has ALS, 90% of the time the EMG will show it in the arms?" Where on earth did you read such a ridiculous statement? If you have ALS, there will be 3 different affected regions of your body, which could mean 2 legs and an arm, 2 legs and the thorax, 2 legs and the bulbar region, etc., etc. You would also need lower motor neuron and upper motor neuron dysfunction. You clearly do not have an understanding of the El Eschorial criteria for an ALS diagnosis. I'd go through it with you but you can do that yourself by looking at the "sticky's" at the top of the "Do I Have ALS" page.

They found denervation in only one leg muscle and a paraspinal that corresponds to the nerve root of that leg muscle. That is the definition of a radiculopathy. Just to remind you: the S1 nerve root innervates the calf muscle and the sciatic nerve encompasses L4 through S3, so the S1 nerve root is only a small part of the sciatic nerve, so I'm not sure why you're mentioning the sciatic nerve, when the whole sciatic nerve isn't being affected by your S1 radiculopathy.

You haven't been diagnosed with ALS because there isn't a shred of evidence you have it . . . and yet you insist you could. You also haven't been diagnosed with multiple sclerosis or congestive heart failure or fibrotic lung disease or E. bola because there isn't a shred of evidence you have any of them. Why is it that you don't think you could have them, given your logic? You aren't making any sense at all.

Please tell me why you think you have ALS, because from what you have shared with us, it isn't even close.

P.S. I just read your second public message to me. Giant motor units indicate reinnervation, which isn't surprising at all and means absolutely nothing when it is only found in a single muscle.

P.S.S. I might sound a bit sarcastic and brash, but I really am trying to help you. I hope you are a rational person who can listen to reason.

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Old 06-11-2010, 07:34 PM #12 (permalink)
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Naw wright you're screwed. She said she's a nurse. Remember. LOL.

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Old 06-12-2010, 08:03 AM #13 (permalink)
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Default Re: Is this ALS?

For whatever reason, you keep responding on my public messages board, to my replies to you on this thread, but I will continue replying to your public messages on here. Oh, and to forewarn you, I am a bit irritated by your replies, so this reply can't exactly be categorized as a Kum Ba Ya moment.

You clearly, clearly, CLEARLY do not understand (although I'm sure you think you do) EMG's . . . or the process of reinnervation . . . or what a motor unit potential is . . . or how you get giant motor units . . . or radiculopathy . . . or anything you have been stating on this forum. You are in waaaaaaaaaaaaaaaaaaay over your head. Don't take this the wrong way, but there is a saying we have at the university when we see students do exactly what you are doing: "When someone thinks they are smarter than they really are and they have a little bit of knowledge about something they clearly don't understand, it actually makes them dumber."

Giant motor units are seen with a single denervating event if reinnervation occurs. It doesn't have to be chronic. That is a fact, no matter what you read on the internet and how you interpret what you're reading. Furthermore, your radiculopathy appears to be a chronic event (not surprising), because they continue to see denervation.

I never said you have sciatica . . . I said you have an S1 radiculopathy (more importantly, so did your neuro . . . and actually, I'm just agreeing with him given what you have shared with us) and that the S1 nerve root supplies the sciatic nerve. Once again, your interpretation of the written word is lacking. The S1 radiculopathy explains your entire story but I guess I have no idea what I'm talking about and your neuro's have no idea what they're talking about. Maybe you should petition to have your neuro's hospital privileges revoked and then you should take over the neurology unit and diagnose everyone with ALS.

Good luck with your irrational thoughts and your troubles interpreting and understanding what you read.

P.S. I have absolutely no doubt your insistence that you have ALS given your "non-ALS" EMG and "non-ALS" symptoms, is scaring people on this forum, which is the main reason I'm a bit irritated. Just a little FYI.

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Old 06-12-2010, 08:53 AM #14 (permalink)
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Default Re: Is this ALS?

One more thing

I can't sit here and tell you that you don't have ALS . . . but given what you have shared . . . there is no reason for you to be alarmed about ALS. Why or how you have come to believe you have ALS is still a mystery. You never answered my question:

Why do you think you have ALS?
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Old 06-12-2010, 09:59 AM #15 (permalink)
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Default Re: Is this ALS?

Wright,

You are logically interpreting EMG results. What a terror striken person often hears is simply 'blah, blah,blah' like what the children in the Charlie Brown cartoons hear when an adult speaks.

At least you have given it your all. You are to be commended.

I don't think, however, that these posts frighten other visitors. Everyone is on their own track and concerned with their own potential diagnosis. A truly anxious person usually has tunnel vision, don't you think?

That being said, hang in there, CharlotteCorday! You are searching in the only way you can. Take deep breaths... I am sure your are in good hands. It is entirely normal for neuros to disagree on the way to a diagnosis.

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