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bluedog

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I have had 3 EMGs at approx. two-month intervals. First two were completely normal. Third shows chronic neurogenic changes in the form of a few large MUPs in left arm and right leg. Clinical exam still normal except for brisk knee reflexes.

Neuro thinks radiculopathy because no active denervation/reinervataion (no fibrillations or sharp waves). Because of this, report also say no evidence of anterior horn cell disease.

But I know that fibs and psw don't always show up, which is why fasiculations can be used as an indicator instead. No fasics appeared either, but I get them all the time in the muscles that had the large MUPs. Also, the same muscles were tested two months ago and did not show large MUPs. So the damage has to be new, not from old cervical and thoracic radiculopathys.

Once again I have no diagnosis but obviously have ALS due to my symptoms and progression, which can't be explained by radiculopathy.
 
Yep! You are right. It is obviously ALS. Why can't 3 neuros see that you are suffering from ALS? You have had 3 EMGs and those must also be wrong, because it is so OBVIOUS that you have ALS!

This is what you need to do immediately! Go buy a walker, a shower chair, a lift chair, hoyer lift, hospital bed a PWC, and a van equipped to carry your PWC. You are also going to need a caregiver to prepare your meals, cut up your food, help you in & out of bed, dress you & undress you and my favorite is someone to wipe your BUTT! I hope you enjoy your ALS bluedog.
 
" Neuro thinks radiculopathy ..... Once again I have no diagnosis but obviously have ALS "

_________________________________________________________________

Why, oh why, are you wasting energy, time and money consulting neurologists if you know more than they do pray tell?

Call me obtuse, but I seriously just don't get it!
 
Since you obviously have ALS, what will you do now? do you have a plan?
 
@Bluedog:

You've been here since 03-10-2013 when you started the thread: "Any possible way this is not ALS?". Remember that one?

A lot of Forum members (many of them in advanced stages of ALS as well as ALS Caregivers) responded to your concerns back then and clarified to you that none of the symptoms you were describing back then sounded like ALS.

None of the people here who addressed your questions are Doctors or Neurologists so, they tried their best guesses to help you.

You however keep insisting that you "have ALS" even when any reputable Neurologist out there have made any official diagnosis to you.


Why do you keep coming back here? You don't have ALS, you aren't going to get ALS, and, frankly, you've got an anxiety problem you need to deal with rather than obsessing about every twitch and tickle and EMG.

Only a fool ignores his/her doctor and asks unknown people on the Internet for medical advice.

The place that you should be getting information from about your symptoms is from your Doctors, not the Internet. If you are as frightened as you claim to be, you wouldn't be looking on the Internet. You'd be at a Doctor's office or at hospital emergency department, screeching for an answer until you get one.

You have a morbid fascination with a serious illness and that is not healthy and needs to be treated. Fix the problem between your ears and you may find your other problems easier to cope with. At this point, it surely can't hurt.



Carlos
 
I am not the most knowledgeable on the topic but from all I read and understand its a treacherous killer and do not know why anyone would be fascinated with having als. My aunt passed away from multiple system atrophy a disease that ends life the same way and I'm definitely not obsessed that I could be genetically predisposed to it. I don't understand anyone insisting they have any disease especially a killer. Especially without any reason to.
Just my 2 cents.
 
Ei Ei Ei Bluedog. Get a grip! The only person that says you have ALS is you! Does that sound rational? :/
 
Ms Pie, is that you trying to shake some sense into Bluedog or slapping him silly?! I can picture it!
 
Barbie,

Ms Pie is slapping him silly... his name will have to be changed to "black&bluedog" . Ms Pie is tiny, but she's mighty!
 
I am so sorry for what you fighters have to endure with dweebs like this. Even in 10 years on an oral cancer forum I have never seen anything so bizarre. God forgive me if black&bluedog actually finds a neurologist to diagnose him with ALS. I spend way more time explaining why I don't when I hear it and why I can now do the things I can after much research about motor neuron disease, diet, etc., from all of you. Thanking you all for your inspiration, drive and determination to live with this horrific disease. You are the greatest people I have ever met.
 
But I know that fibs and psw don't always show up, which is why fasiculations can be used as an indicator instead. No fasics appeared either, but I get them all the time in the muscles that had the large MUPs. Also, the same muscles were tested two months ago and did not show large MUPs. So the damage has to be new, not from old cervical and thoracic radiculopathys.

Once again I have no diagnosis but obviously have ALS due to my symptoms and progression, which can't be explained by radiculopathy.


I've been in diagnostic limbo for ten months. I am under the care of two AANEM accredited neurologists, one of whom is the head of an ALS clinic.

I've had several EMGs, MRIs, lumbar puncture, muscle biopsy. I'm hyperreflexic, have hand tremors and elevated CK.

They've pretty much ruled out ALS by now. Is your expertise limited to ALS diagnostics or can you diagnose all the other neuromuscular disorders?

I don't know if my insurance would cover an internet workup by you but it couldn't hurt to get another opinion. You really seem to be up on all the acronyms.

Don't listen to all the haters. You really seem to know your stuff!
 
The bluedog is pretty much at the end of his rope now in the backyard of limboland. So can you take me seriously for a minute. I'm glad that I'm providing entertainment, but talk about kicking a dog when he's down.

I just heard back from the dr. about my cervical MRI I had on Wednesday. No evidence of radiculopathy or anything else that could cause the EMG results or symptoms. Now she's saying, "I don't _think_ you have ALS." She's not so sure now. And she is now wondering too why the MUPs didn't appear on the EMG two months ago if it was an old injury.

So now there is no reason for the abnormal EMG other than ALS. And I was correct in thinking that before the report came back. Not that any sharp 6th grader with an internet connection couldn't have figured that out.

My plan?

(1) Try to get FMLA leave for 10 weeks to try to extend the time my family will have before we have to start paying for insurance (too weak to work now).

(2) Try to get another neuro (#6) to diagnose me with ALS based on the EMG, ENT findings, and symptoms.

(3) Try to get early payment of Life insurance policy once diagnosis made.

(4) Move to Oregon, establish residency, and get Physician Assisted Su***** kit for when I can't take it any longer.

Paul71, my expertise is only in ALS diagnosis. No need to become well versed in any other meuromuscular disease because it is almost never a different disease. I don't recall anyone's dr. on this board ever giving them an alternative neuromuscular disease to think about. It is always anxiety or wait and see. Sure, sometimes maybe MG, but that can be spotted when the patient gets out of the car in the parking lot.

As the stories on this board show, it ALWAYS turns out to be ALS, except for the 2 or 3 people in the past 10 years who lucked out by having throat cancer, lyme, or some other lottery win disease. That's what we need to tell the newly undiagnosed that post here.

And Paul71, you can only rule out ALS by time, another diagnosis, or autopsy. So I don't know what your drs are thinking. Did they give you the name of another neuromuscular disease to ponder. I doubt it.

The saying shouldn't be "it can only be ALS until it can't be anything else." It should be "it is always ALS unless proven otherwise, which rarely happens."
 
Trying to respond but haven't been able to get past moderation. Basically, I had a cervical MRI last Wednesday too. Results show no radiculopathy or anything else to explain EMG or symptoms. Neuro now not so definite about the no ALS verdict.
 
I had 3 normal emgs then 1 showing polyphasic units - a muscle biopsy showed mitochondrial disease- its not always als!
 
Thanks for the reply oscar1. In mitochondrial and other muscle diseases, I believe the MUPs are small, not large though.
 
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