Old 02-26-2018, 07:14 AM #1 (permalink)
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Default What should i ask at my next visit?

So I have a an appt. coming up on the 1st of March and I haven't gotten a true diagnoses yet. The team at OSU neurology believe its ALS, I am not convinced however because my symptoms are really atypical. My first symptoms were fasciculations 8 yrs ago in my calfs, constant, not painful with just achiness. About 3 yrs ago they spread to my left shoulder and from there down my arm, across my back and chest, then to my other arm, these have all been constant and never stopped. Over the last 2 yrs I have weakness and atrophy on the upper left side all the way down to my fingers. Emg was abnormal with some chronic denervation and reinervation. I have had a mri of the brain/neck, all kinds of dna/bloodwork, which were all negative or normal. Does anyone have any idea of what types of questions I need to be asking at this point? At my last visit, the last thing my neurologist said to me was "what else could it be". So I would like to be a little more prepared for that response this time around.
Thanks for your time.
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Old 02-26-2018, 07:29 AM #2 (permalink)
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Default Re: What should i ask at my next visit?

This is a repeat visit to the same neuro? Or a new person?

Have a read through the sticky on second opinions and first clinic visits either way. It is near the top of this subforum. It talks about auestions if the diagnosis is not firm. Do you know why you don’t have a “ true” diagnosis yet? Are your EMG finding not wide spread enough?

What tests do you still need or what needs to be done to give you a firm answer? Is there anything else still on the table? Those are questions for you to ask but it sounds like the last doctor said there wasn’t anything.

Was this a doctor at the ALS clinic? That is where you need to be at this point especially if you are getting wishywashy answers. If it was an ALS specialist you might seek a second opinion.

I am not sure where things stand with you but we do have a thread in the PALS section called it may seem silly where we talk about how hard it is to believe the diagnosis

Good luck. Please keep us updated
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Old 02-26-2018, 03:02 PM #3 (permalink)
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Default Re: What should i ask at my next visit?

They will no doubt do a new EMG and they'll be looking for both active and chronic changes. I've not heard of a solid diagnosis just based on chronic changes, without fibrillations and positive sharp waves that are supported by weakness.

So it depends on if they do the EMG before or after you see the doctor. My doctor does all his own EMGs so I got feedback while he was doing it. At Mayo and Johns Hopkins it was different. I met the doctor, then he ordered the EMG. Another doctor did the EMG and also a short pulmonary function test. Later that day I went back to the doctor and he went over the tests with me.

If OSU does not confirm ALS, ask what other things it could be and what tests are necessary to rule out or confirm.
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Old 03-01-2018, 06:10 PM #4 (permalink)
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Default Re: What should i ask at my next visit?

Thanks for the responses. I had my visit today and was told they have exhausted all of their options for a different diagnosis. Also, that I am an atypical case, which I am very grateful, but inevitably he believes in time I will go the dreadful course of ALS. As of now, my weakness and atrophy are focused more to my left side. My fasciculations (accompanied with those lovely spasms) have become more intense on the right side, which if it follows suit with the left, I will start to see weakness and atrophy in the near future. For now, I am going to keep pushing on, working, hitting those few chords on my guitar I can still do and most importantly wrap my arms around my wife and kids every chance I get.
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Old 03-01-2018, 06:51 PM #5 (permalink)
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Default Re: What should i ask at my next visit?

Have you had two opinions? I would definitely get a second opinion. I'm not saying I think you don't have ALS but it's always good to get a second opinion from another neuromuscular specialist.
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Old 03-14-2018, 08:49 AM #6 (permalink)
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Default Re: What should i ask at my next visit?

I definitely need to get a second opinion but that will have to go on the back burner for now. Who thought it would be so costly to go to a neurologist ?lol? I talked with one of the neurologist the other day on the phone. At this point, they "think" I am early stages of ALS. However they believe I also have BFS. I told them that makes a lot of sense to me because of how long my symptoms go back. It definitely is possible to have bfs and (for anyone reading this pay attention closely) get ALS as COMPLETELY DIFFERENT diagnosis because they are not related in any form. I have read a lot where people on here are freaking out about twitching. For those people, if that is your only symptom you are in the wrong place. My atrophy and weakness didn't start until about a year and a half ago, and is progressing slowly. I have always been exceptionally strong for my build and am gauging the loss with weights for my own amusement. I will do an update down the road when I hopefully have more clarity.
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