Question about limb onset als

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happy

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If one has limb onset is this less progressive than other forms of als? Also, if limbs are affected arm then legs, is the buzzing feeling that comes with some, can it come and go? If it is in the shoulder region does this mean that bulbar is next....statistically speaking?

Two week countdown til second emg little hope left
Robin
 

rose

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Hi Robin, I'm curious as to why you would think you may have limb onset als? I don't know if I missed some posts or what, but I feel so badly that you're this upset. I thought that your last EMG showed ulnar nerve entrapment (?) which wouldn't have any relationship to ALS.

What did the neuro find during his exam that was abnormal? What were your reflexes? It is my understanding that one would have to have abnormal reflex response.

If this doctor didn't order any other information seeking tests than the EMG, what other testing has been done recently? Have you had an MRI? Was there testing done to check for an underlying auto-immune cause? Did he order a heavy metal test?

I remember having so many tests done, the EMG's are just a part of it, and, as MND is diagnosed by clinical signs and ruling out other disease, I'd just think that if there hasn't been a course of action mapped out, that your exam did not give the doctor indications that you should be worried about any form of MND.

I hope you're able to get your attention focused away from this, or the time you have to wait until your test is going to crawl by.

I can't give you any personal experience with limb onset, but, if I were you, I'd go get a pedicure, a massage, or something else to pamper myself, and be reassured that your doctor expects to find a normal outcome to the EMG. If he didn't, he'd have mentioned other areas in his exam that he was concerned with, and would have repeated tests you'd had previously, or ordered new ones.

I hope this helps, take care :)
 

happy

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Hi Rose,

Well, my last neuro that did my emg SAID he thought it was ulnar entrapment, but when my new neuro was looking over the emg results he said I could read over his shoulder all I saw was ABNORMAL and DENERVATION. The old neuro also said he did not know what I had...and sent me to an als specialist. I am not sure about reflexs. When he hits me with the hammer on my knee I am afraid that i am going to kick him out the door. Also I notice that in the beggining my foot when he scratched it on the bottom, it used to curl under, my toes anyway. Now when the do it it doesnt do anything. Strange observation.
My legs are weak but it all started with cervical neck issues and after about 7 months it has affected my calves. Now, for about the last 2 months i have noticed a buzzing in my shoulder..not the outside, but the trapizus muscle from the neck to the shoulder bone on the upper back. it comes and goes.

So, with all that, oh and also as I mentioned before my new neuro told me to describe my symptoms as if I have never told it to anyone else. Like he was the first dr i have seen. He is the one who said, because i never mentioned als or the fear of it..he said sounds like you have Lou Gerhigs but I cannot be sure until I do an emg on the legs and body. I asked him why dont you just read the one I had done? He said because he does his own and that he was sorry he knows how painful they are..(at least i think so) Yhe main thing that confused him is that i can still hop on one leg, walk on toes and heels and I am still not completely weak, even though I am a lot weaker than normal according to my standards...

So that is why I am asking...I guess I am preparing in my own way.
Thanks, Rose
 

happy

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oh, my mri showed narrowing of the spine i the cervical area but not severe. Also all labs I have had and lumbar puncure i had all normal. The Nerve conduction study showed ulnar damage. My potasium levels were alittle high but noone seemed concerned. Hepatic Function alttle high but no concern.
brain ct normal everything normal...
 

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He already sounds like a bad doctor. What kind of doctor makes a guess at Lou Gehrig's Disease? Go to a ALS specialist and if he is a specialists find another one.
 

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He already sounds like a bad doctor. What kind of doctor makes a guess at Lou Gehrig's Disease? Go to a ALS specialist and if he is a specialists find another one.

I've got to say that I agree with Tom. I've never heard of a doctor bringing up ALS in this fashion to someone, especially before any more diagnostics were done or other findings from your exam explained to you.

For one thing, there is the El Escorial that is supposed to be the standard for diagnosis of ALS. It states:
The EMG signs of LMN dysfunction required to support a diagnosis of ALS, should be found in at least two of the four CNS regions: brainstem [bulbar/cranial motor neurons], cervical, thoracic, or lumbosacral spinal cord (anterior horn motor neurons).

For the brainstem region it is sufficient to demonstrate EMG changes in one muscle (e.g. tongue, facial muscles, jaw muscles).

For the thoracic spinal cord region it is sufficient to demonstrate EMG changes either in the paraspinal muscles at or below the T6 level or in the abdominal muscles.

For the cervical and lumbosacral spinal cord regions at least two muscles innervated by different roots and peripheral nerves must show EMG changes.





You haven't even had an EMG done for all of these regions, right? That would be awful to bring up as a suspected cause without the results of it already. So if this is what he told you just by one office visit, in addition to not finding any abnormal weakness, or see fasciculations for himself, then I'd definitely find another doctor.

Good luck, :)
 

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I had a weak spell that caused 3 local docs to guess it might be ALS, and look where that got us. :-D Seriously, the ALS clinics see so many more cases that they are the ones to put your faith in. JMO. Cindy
 

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Thanks everyone for the reassurance. I just saw my primary..stress related and she prescribed cymbalta for me. Hope this will calm me down a bit. She also read his notes via EPIC and saw the abnormal emg results for the arm. The last neuro did the emg on the arm and my neck. (ouch, it was the worst pain ever) my primary said that they have to do it on my legs and see if the denervation has progressed. By the way the legs have been I would say yes. But only the emg this last one will be the determining factor. Until then TWO FRICKEN WEEKS I must wait.
Talk to you all on the other side.

Must be strong, must be strong, must be strong, oh my god...i cant.
 

wright

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Just a couple of more things, Robin

The EMG was most certainly abnormal: you have denervation of the unlar nerve and you also said that your NCV was abnormal. That is how your original neuro diagnosed you with the ulnar nerve entrapment. Dirty EMG's can be caused by a gazillion different things (other than ALS), including ulnar nerve entrapments. If ALS was the only thing that caused dirty EMG's, then ALS would be pretty darn easy to diagnose.

Narrowing of your spinal cord at even the cervical level can cause leg weakness. It's called cervical myolopathy (not to be confused with myopathy, which is completely different).

Again, he said that after he examined you, he doesn't think you have ALS.

I hope this all helps.

P.S. If he actually said he would have diagnosed you with ALS initially, then that was COMPLETELY irresponsible of him to say. It isn't a disease a neuro should just throw out there. Besides, your initial symptoms weren't even close to ALS symptoms. From what I recall, you started with sudden (that is, overnight) pain radiating down from your neck into your fingers, followed by weakness and then some atrophy. That is classic for radiculopathy . . . or Parsonage-Turner syndrome . . . or, you guessed it . . . ulnar nerve entrapment . . . or a number of other things. NOT ALS.
 

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Hello Robin,

Wright is correct concerning neuros and their caution of suggestion ALS at first glance. My first neuro wouldn't even mention the term "ALS". She stated that there was "one thing" she wasn't looking to find. The second neuro, an ALS specialist, said it was far too early to even bring ALS into the picture. Too many other things to consider first, I suppose. I like to think that way, too. Out of the hundred other things it might be, lets look at those first. In my case, I'm looking for them to find an ingrown toenail or something, remove and tell me I'm all better now.:-D
 

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Wright and Zaphoon..thank you so much for trying to cheer me up. Wright as always I put my faith in you. I pray that you are right. If you are I'll fly out we'll celebrate! but as for now i feel doomed. I dont know why but I feel I have it. I looked at PDaddy's symptoms when he first came on ( I remember) and Omar. I am just like them. Just wait and see, that is all I can say. Good Night all see you in the morning
 

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Robin, they are right on the money. I do have limb onset in the legs to start with and now moving up my torso.
When the Doctors hammer my reflexes, in my legs, nothing moves. I thought he was trying to hammer in a nail he hit me so many times on the knee. Nothing,Nada, Zip, Dead, Gone, Lost, whatever.

Anyone who uses just a couple of tests and guesses ALS ought to be shot. :rolleyes::twisted:

There is no reason to scare the heck out of someone until ALL the tests are done. It took 18 months of tests and a Biopsy of thigh muscle tissue before I got my Dx.

Peace be still. It is way too early to get on the ALS train. ;-)

Take one angel and call me in the morning.............
 

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Al, you are so sweet, thank you. I did not realize that the reflexes would be gone completely. I thought it was just the opposite. I have very hyper reflexes this would be incredibly good news for me right now.
 

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Oh yea one more thing, isn't it nice that my neuro drops the bomb that he thinks I could have Lou Gerhigs and take off for Japan on vacation before completing my test. How in humane
 

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Happy,

Is he doing your EMG himself or someone else?

Hang in there,
 
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