Concerned

[Mon]

Thanks very much for your replies. You guys have been such a helpful outlet. Much respect!

 

[Mon]

Hi All, writing an update for you. The neurologist was in touch, he called due to COVID-19. Recap ..EMG done Feb 19, MRI done March 1. April 3, followup. Mri was clear, blood work was all good. He asked many questions regarding how my dad was feeling, has he lost any weight etc. Any changes basically
ALS was not mentioned. He did say he would see him again on the summer. He also mentioned he coukd not say why arm was weak....i was not present to ask doctor about EMG. Not too sure what to think. My dad is at a over a year of no huge change im symptoms. Any thoughts?

 

[affected]

I would try and spend the time til summer doing all the things possible to live well - hard in the world circumstances for anyone, but so important. You won't ever get this time back regardless of any diagnosis or lack of.

It's good that they did not diagnose him, did not mention ALS, said they did not know why. ALS is probably really really low on the possibility list, so run with that for now. None of us know what the future holds, so don't focus on the worst.

Thanks for updating us.

 

[Mon]

Thank you to all. Your replies and support are very much appreciated. I will update again in the summer. I think this neurologist is looking to see if there is changes or progressions. I truly hope not and plan on mentally relaxing between now and then....at home..cosidering its all stay at home. All the best to all of you.

 

[Mon]

Hi everyone, i hope everyone is keeping safe. I wanted to ask why a EMG would be repeated? In the big writeup of do I have ALS its stated a EMG cannot be done too early. Nerve fibres die before you would feel weakness. Does it often take multiple EMG to diagnose? Thx you in advance for reading and any imput is greatly appreciated.

 

[Bestfriends14]

For my husband, ALS was suspected from the first EMG. He was rushed to a neuromuscular specialist from there to do another EMG for confirmation. This neuromuscular specialist usually has a year and a half wait but my husband got in within 2 weeks. From the first onset of weakness, nothing was stagnant and always progressed, albeit slowly

 

[lgelb]

There isn't much we can say without seeing the EMG report, which you can post with the name crossed out. You should always have/keep all lab/imaging results in a file together anyway. Records are not always shared in a timely fashion between clinical offices, and everyone should be informed on their own results.

Like any other test, an EMG may be repeated when initial results suggest a need for further data. Also, academic physicians often "do not trust" outside clinicians and may order repeat tests on general principle or to use equipment that is not available to all clinics.

 

[Nikki J]

There are people who are upper motor dominant whose symptoms first show up on their clinical exam with multiple signs that are specific to that syndrome. the emg for them may not initially show als so they are followed. However they are told there is something seriously wrong and it looks like motor neuron disease. Time may be needed to see if it is pure UMN ( PLS) or ALS which also involves lower motor neuron disease and will show a specific pattern on emg.

there are also people seen early in disease who show the ALS pattern but it is not widespread enough to meet criteria. This happened to me. My emg was consistent with als but too localized for diagnosis initially

 

[Mon]

Thank you all for your replies. I would hope if an EMG is consistant with ALS regardless of being localized or not, early or late stage. Once ALS is even a consideration it would be mentioned as a possibility.
In our scenario, the EMG was done Feb 19, being repeated by same doctor this July 16. All other major tests should no nothing, including MRI brain, spine and battery of blood work.
I will request copy of 1st EMG.

 

[Mon]

Good morning

Nikki, i have a question for you in response to your last reply to me. If a Emg shows patterns consistant with ALS in 1 area, why would more time be needed. Do they need to see it elsewhere? Like a spread. I feel like that big write up on the site says you cant do a EMG early?

 

[Nikki J]

Yes it needs to be more than one nerve area. the diagnostic criteria specify that. that doesn’t mean the doctors were not immediately concerned for me

you really need to get the emg and find out what the neurologist thinks. It seems like you are googling and guessing. attend the appointments if you are allowed. When you have specific information and the emg if you still have a concerns then ask

 

[Mon]

Hi all, wanted to give an update. My dad saw neurologist who did a clinical exam today and then gave his recommendation. Just refreshing notes that EMG was done late february detected alot of nerve damage in left arm( where weakness is) and a little nerve damage in right arm Mri was clear and blood clear. Today he suggested it is a nerve disease, Als was mentioned, it cannot be ruled out. He is sending us to an ALS clinic in Toronto to see director who can hopefully figure it out. EMG and blood work will be repeated. Just updating you all, thank you for taking the time to read/comment.

 

[Nikki J]

I am sure the ALS clinic will be more specific and either give a diagnosis of something or do more tests. Again if you were able to post the emg we could comment better. Otherwise we would just be guessing. Do let us know what Toronto says

 

[Mon]

Not sure why my folks dont have the EMG copy. I wish i could post for your opinion. The clinic will be helpful, its one of the top in Canada. I will continue to update all of you. Thank you.

 

[Mon]

Hi everyone, does anyone know do general neurologists not give diagnosis? Do u typically get official diagnosis from clinic? Does nerve damage in multiple areas within one region enough to give a diagnosis, that coupled with weakness and muscle loss acknowledged by doctor.