Back again

[elb5003]

https://www.alsforums.com/forum/do-i-have-als-als/25058-question-about-diagnosis-2.html

Hi everyone, I'm unfortunately back agains. I posted the link to my original post a few months ago above. My dad went for a follow up at university of Miami . I originally thought there was no weakness but I guess they did find weakness in his right foot/ankle. When my dad originally saw the neuro at U of M he said his right ankle was a 4 out of 5. When my dad went back to him for his follow up 3 months later he is saying the ankle is now a 4- out of 5. He is now less confident that it is not ALS. As you can imagine we are all very scared but trying to keep a positive outlook. The neuro at UM suggested another EMG but said he could wait another 3 months so that's what he's doing. When he physically examined him he said he could not feel any fasics which was a good sign. I guess my questions are....

Shouldn't the Neuro want his own EMG taken? I would have thought this would be one of the first things he wanted.

From what I understand there are over 100 diseases that can effect the motor neurons, but do a lot of them mimic als?

My dad said he can still feel the fasics occasionally but they are much less. He has them in his left leg as well, and rarely in his arms and other places, but no clinical weakness at all in these other places. I'm sorry if this post is almost pointless. I guess I'm looking for any reassurance that this could be anything else but ALS. Sometimes I feel like this is happening to me. I am so stressed out and completely heart broken for my dad. Thank you so much in advance for any insight.

 

[Zaranataly]

I hope your dad finds an answer soon.
I am on the same road. It could be a 100 different things and the process is very stressful.
Best of luck to you and your dad!

 

[elb5003]

Thank you, and good luck to you as well. How long have you been in the process of finding a diagnosis?

 

[elb5003]

Also wanted to add that my dad's atrophy is in his right foot/ankle but he gets no twitches there. Does that have any significance?

 

[Atsugi]

I don't believe twitches are reliable indicators of anything. My PALS got twitches while the nerve was dying, before the atrophy was visible. I get twitches often, and I don't have ALS at all.

 

[elb5003]

Thanks for your response. Yeah, the more I read the more I realize twitching just isn't a good indicator of anything really.

 

[adozi]

Has he had all the other tests to rule out ALS? Does he have a diagnosis of clinically possible /probable ALS? If so, he can get benefits and riluzole. I'm sorry, i know what this feels like. It's much easier to get the things you require IF he has it once you have a diagnosis. Not knowing is the enemy. You're right to want the EMG sooner. You should demand it sooner.

 

[elb5003]

As of right now the doctor hasn't made a diagnosis. He wants to see he him in 3 months, and at that time he is going to do a 2nd EMG. I know I asked this in my last thread, but really only got one response. Can the EMG be done "wrong", such as the needle being inserted wrong, or something along those lines.? It was a fellow that did the EMG on my dad at a different neuro. She kept running out of the room in the middle of the test to ask the neuro questions. The neuro then put on the report that he was present for the test, but obviously wasn't. I'm a little confused at the way an EMG is interpreted. Are you supposed to be there watching the test and interpreting at the same time?

 

[Clearwater AL]

Zaranataly, elb5003 asked you how long you have been in the process of finding a diagnosis. Your symptoms that had you scared silly began in 2011 but it is really unclear when you first went to a Neuro. I guess that is the question he is asking being that - that is when the diagnostic process really began. Just in case you missed his question.

 

[adozi]

I think it's recorded Electronically, and the attending would have to sign off on the results and the fellow's interpretation. But if you're dissatisfied, ask the doctor. If it says he was present and he wasn't even there, it may even be fraud, but fellows have already been through 3-4 years of neurology residency and should be able to do EMG independently i think (i used to work in graduate medical education ). My Doctor didn't say i had ALS, but i checked her notes later, and it said "clinically probable ALS. " you should ask your Doctor about this. If he doesn't answer you or keeps saying there is some need to wait for the EMG, ask if he can refer you to another ALS neuro who can get you in sooner.

 

[Dusty7]

Eric, sorry to see you’re back.
To me, it’s not a good sign when a neuro says you don’t have ALS (“The neurologist is very confident that he does not have ALS.”), then 3 months later says, “Well, maybe you do.” Not something to inspire confidence.
You ask: Can an EMG be done wrong? Yes, I’m sure it’s possible, though not common. But it is certainly possible and the scenario you describe is not one to inspire confidence.
And the neuro at UM is now suggesting an EMG in 3 months after first saying, “He doesn't want to re do any of the tests because he thinks it is un necessary.” Not something to inspire confidence.
“Are you supposed to be there watching the test and interpreting at the same time?” My main neuro does his own tests. (At a major medical center, my tests were done by someone else, but I never had any doubt they knew exactly what they were doing and I asked a lot of questions to confirm that.) From what I have read, there is a lot that can be learned from the appearance of the waves on the screen that cannot be conveyed in the numbers on the charts.
You ask: “Shouldn't the Neuro want his own EMG taken? I would have thought this would be one of the first things he wanted.” Yes, I would say so. I had 4 EMGs in the first 3 months and that is a big part of what my diagnosis was based on.
In my opinion, fasciculations are caused by many very common causes and are therefore not very diagnostic. The lack of clinical weakness is much more important. According to the “ABCs of ALS” on YouTube (done by the Bay Area ALSA), clinical weakness is an essential symptom in ALS. Yet your father “goes to the gym 5 days a week and does at least 45 minutes of cardio every time.” Very, very strange… And as I understand it, the only symptoms your father ever showed were fascics and that is all the neuro referral was based on.
Regarding, the EMG summary, I guess you still don’t have the charts from the EMG, but the comment that the abnormalities were “evident more in bi lateral lumbar, and less in cervical myotomes” certainly raises lots of questions. Has an MRI been done to rule out a lumbar radiculopathy? (Not that there's any pain or weakness to indicate a radic.) Was there any denervation in cervical myotomes? Were any of the thoracic paraspinals tested? Results? ALS is a disease of widespread acute and chronic denervation. What muscles show this widespread denervation?
I am not a doctor, but I think I would be looking for another opinion. I know you just finished that route, but given the alternative, it’s what I’d do. I am just not seeing what they are basing an ALS diagnosis on.
Wish I could tell you somebody good in Orlando, but I can’t.
Sorry for the runaround you keep getting, but push on. Good luck.

 

[GilWest]

What gave me comfort (I guess?) during mom's diagnosis was the attitude that either she has it or she doesn't. If she did not have it: Great! If she did, it would reveal itself very soon...which it did, and we are working to make her safe and comfortable as possible. Do I feel like I help enough, certainly not! But I have a family and life of my own to care about. I think I have found a balance that keeps me sane!

 

[elb5003]

Thank you dusty. I always appreciate your comments!

Well now the neuro is saying he does have some clinical weakness and he said his ankle is now a 4-/5. Is there a calibrated machine to test muscle strength, or is it always preformed by human interpretation? Is it always reliable? As far as the comment that the abnormalities were “evident more in bi lateral lumbar, and less in cervical myotomes” certainly raises lots of questions. There have been mris's done, but from what I understand they were of his brain and to check for pinched nerves in his neck/back., but there could have been others. Why does this raise a lot of questions? As far as the question about denervation in cervical myotomes...I really do not know. I posted all of the results in terms of words to my last post, the one you broke down for me. It's very confusing to me that this guy hasn't really pushed my Dad to take another EMG. My dad really hates the test, but I know it it's very important for this process.

 

[elb5003]

Thank you adozi! I really want him to take the EMG again. From what he was saying it sounded like a strange situation.

 

[Zaranataly]

Zaranataly, elb5003 asked you how long you have been in the process of finding a diagnosis. Your symptoms that had you scared silly began in 2011 but it is really unclear when you first went to a Neuro. I guess that is the question he is asking being that - that is when the diagnostic process really began. Just in case you missed his question.

I missed the question.

The first time I mentioned this to a doctor was when I was 3-4 months pregnant in early 2012 but my doctor said that I had to wait until after my pregnancy to be sent to a specialist.

Bu then I basically just got "used" to the fasiculations and decided to just ignore them but by early 2014 my left leg started "shrinking" getting weak so I finally decided to tell my family doctor about this.

My first appointment with my first neurologist ever was in late March or early April.
Now i am waiting for my appointment at Baylor ALS clinic in Houston.

I tried to ignore my symptoms for as long as I could. I really did. Denial is a powerful thing.