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All I guess I can really say now is.... Sigh :(

January 28 cannot come soon enough.
 
Another update:

I just received copies of the neurologists notes, and test results today. Some things seem a little different than what he told us in person and my hopes are that some of this information can lead away from ALS and my hope is high after reading over them. I will put in quotes a few things that the report says, typing out the whole report would take me all day and would kill my hand...

The EMG study shows active and chronic neuropathic changes essentially in all muscles tested including the cervical paraspinals muscles at C6. I did needle the right leg and left arm, there is some increased insertional activity but no real acute changes.
This was from first EMG.


EMG revealed normal nerve conduction studies essentially, but poly-radicular active neuropathic denervation.
This was the 2nd EMG, which he conducted only in my legs.


His exam was remarkable for significant atrophy of the right upper extremity, no fascilations. Also noted was significantly increased tone in the lower extremities, hyperreflexia, and some ankle clonus (4 beats) more so on the right.
The fascilations I have now my wife hadn't noticed until several days after the 2nd EMG, but the Dr. hadn't noticed them either which is good. (I think)


The findings in the right upper extremity are poly-radicular, there is no evidence for a significant measurable compressive neuropathy. Motor neuron disease seems less likely, based on the clinical picture and absence of fascilations. The poly-radicular process in the right upper extremity need to be explained.
In discussion notes of first exam.


Reviewed things in detail. The picture is a bit confusing. He has upper motor neuron findings in the lower extremities some increased insertional activity but no fascilations however, which are unequivocably abnormal, and clearly it is important to exclude some sort of a cervical process contributing to that as well.
In discussion notes of second exam.


Those are some of the key things I noticed in the report, but of course I am not in the medical field so much of it I simply do not understand. And can't tell if it is significant. I had blood labs done too but everything is in normal ranges.

So my parting questions on this post are:
Does this information mean it is unlikely that I have ALS?
If not, are there certain things that I can look for in these reports that can help point away from it?
 
The main thing is he said several times MND is less likely, and also I read the words " EMG revealed normal nerve conduction" I know he followed it with more, but that alone should give me hope, right?
 
Yes, you're right to have hope. Much hope. This is not a done deal.
 
It's a bit sketchy. Nerve conduction (both sensory and motor) should be normal in ALS. In other words, your nerves can do their job when they're connected.

It's the acute + chronic denervation [loss of the nerve's connection to the muscle] criterion that seems vague from the snippets you posted. I see active but not chronic denervation, but a summary statement about active and chronic "changes."

He only mentions fasciculations but not fibrillation or positive sharp waves. In MND, EMG shows fibrillation and/or fasciculations. The motor units are polyphasic and have high amplitude and long duration. There's nothing measured about the motor units in what you posted. That would be something to look for.

He mentions the possibility of C-spine disease but you had an MRI, I believe. He does note UMN as well as LMN signs, but basically does not express a differential (unless you left that part out). He simply says "it needs to be explained" without a plan.

If you want, you can scan the rpt after blacking out your name and upload it as a photo.
 
I do appreciate everyone's time and efforts and putting up with me trying to find any reason I can to point away from this. At this point I think it is best for my own sanity to just go away for now. You are all very nice and supportive and I do thank you from the bottom of my heart for all the information you have given me. The waiting to get to Mayo is still driving me nuts, but with all the information here I am finding myself consumed by it, checking it every hour. But honestly I hope I never need to return except to simply post a reply that I am free and clear. I wish you all the best, keep up the great work! And a HUGE Thank you!
 
I had planned on staying away from here until after my appointment, but I decided I would give a quick update...

I received a call from my local neurologist who had referred me to Mayo today to check up on me. We talked for a few and told him we had been trying to get my apt date moved up. Then I started asking him a lot of questions about what is going on. He really tried not to answer the questions directly, and saying to let Mayo run their tests. I stood firm and finally just straight asked him how likely, based off the tests that have been done so far, that this could be ALS. After some additional prodding, he told me that it is a very strong possibility. This of course sent my heart racing. I will still hold out hope until I receive the final diagnosis but my thoughts are very negative right now, and I am quite worked up.

Anyways, he told me he was going to call Mayo and see if they had any openings sooner, we have been calling twice a day every day trying to do the same. 5 minutes after I hung up from him, Mayo calls and moved my apt to the 18th! Hoping that it brings some answers... it's only a week away now!

Sorry if I kinda bounced around a bit there, I kinda feel like I am on a roller coaster of emotions right now.
 
I'm glad they've moved your appointment up. It's as smart of you to stay away while you were waiting, but now that roller coaster is quite understandable. We didn't experience it prior to diagnosis as we never for a moment expected ALS, but the ride has been overwhelming at times since then. Hang in there and don't give up hope. If you do join our family for the duration, know that we will be here and that some of the very best people I know hang out here. Fingers crossed for you!
Becky
 
Also glad to hear you have a sooner appointment. Prepare for it thoroughly so you get the most information possible. As becky said we will be here for you if needed. So sorry things are trending this way
 
SPRAWL: Take a notebook with questions. Take good written notes because I guarantee when you leave that office you won't be sure of a thing you thought you would remember.
 
I will have to have the wife take the notes, I can no longer write. But thanks for the your advice and everyone's support during all this.

Does anyone have any tips on some key questions I should ask? Or just any tips at all? Yes I have read over the Getting a diagnosis sticky.
 
I always think before my appointments about what I want to know when I leave then I think about how my first questions could be answered.
Clearly your prime question is is this ALS? If they say yes, then ask is there anything else I should be tested for? Why can't it be anything else? What makes the diagnosis? What does my clinical exam show that makes it ALS? My EMG?

If they give you another diagnosis same questions. What ruled out ALS?

If they say they can't give you a diagnosis which does happen- ask what is still in the differential? Are there more tests needed to rule out certain things? Is this a matter or waiting to see? Sometimes they are sure it is going to be ALS but if you don't meet the criteria some doctors won't say it. Maybe ask what is missing to make an ALS diagnosis? Does your clinical exam fit the criteria but not your EMG?

Hope this helps a bit
 
Sprawl, if, in fact, it is ALS, I recommend asking the doctor to write a simple letter in plain English stating the diagnosis. I think that makes it faster and easier for VA and SS and local agencies to understand and provide benefits.
 
Sprawl,
I've been thinking about you! I'm so glad you were able to get the Mayo appointment moved up. I am somewhat kicking myself that I canceled mine because I would be there right now, but looks like I'm heading to Houston next week so everything is working out.
In my preparation for my appointment I think my biggest questions and concerns for me is understanding and knowing what level of progression I am at. Muscle strength in my hands and legs, and my breathing. I received a lot of results and labs last week and I couldn't understand any of it. Thank God for the good people on this forum for helping me. But I guess the thing we really want to know is how long do I have? what's coming next? what needs to be my concern right now? What do I need to prepare for? The drs might not be able to prepare us for this because we don't know how we will progress but I think understanding our current levels of progression could possibly help. I have had many people tell me you have to prepare and stay ahead of the disease. Good Luck! Let us know how it goes. Praying for you!
 
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So, first neurology exam at mayo done. It's not looking good. He want another EMG done for confirmation, but he told us based on the exam and previous tests, it is most probable to be ALS. I kinda prepared myself mentally for this outcome, but its hitting wife pretty hard right now. I am still holding out hope that the new EMG will point someplace else but it will be what it will be... Sigh.
 
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