ALS Diagnosis and Treatment Explained

[XinaMae535]

Hi all, I am not sure if this has been posted before, but I came across this video tonight and thought I would post it here. It is of a top neuro/A** specialist at Mayo Clinic explaining the ALS diagnosis and treatment.I found it very reassuring. I hope it HELPS and does not cause any panic in anyone.Key key key points: Weakness! First sign! He said everyone has "fasciculations", but they are only worried about a** if it is accompanied by weakness and atrophy. Weakness meaning, you CAN'T do something (clinical), not "my arms feel heavier" (perceived).He mentions how important the EMG is. He said it can take a year to diagnose a**, but in that year the patient gets weaker and weaker. So if you had EMGs and follow up EMGs, and they are ok, you are ok!He mentions how pain, tingling, numbness, sensory stuff is not involved.All things which I think may be able to help reassure many or most of you.

 

[XinaMae535]

Oh and I only came across the video because my mother (lives in FL) told me she saw a documentary of a woman with ALS on a TV show. She has had it for over 25 years and has way outlived the prognosis. The documentary was about how marijuana helped her, get this, move her arms and legs again, and helped her get up out of her wheelchair and helped her depression, and twitching, and and and and! All good things! This lady is an advocate to get medical marijuana legalized in Florida. My mom told me to look her up on you tube. When I watched one video of this woman explain her story, the video I posted was one of those recommended videos.

 

[RedKnight]

Thanks for the video! Very informative did you hear him say that the EMG is the like the mother of all test to get a diagnosis that should be reassuring for you have a good evening. I wonder if I'm feeling weak if that is perceived or clinical because I tire out quickly what you think.

 

[XinaMae535]

Yes it is reassuring! I believe it is perceived since you said "feel". Clinical is "I can't...", not "I feel...". And the heaviness and tiring out quickly is common in BFSers, many of us have it (me too).

 

[Deutsche]

I am a bit to scared to get anxious again looking this video...But this key message about the EMG is the opposite of what is mostly practice and opinion here in Germany though...Most of the leading neuros or als ambulances don't do it when the clinical is ok. I've got two EMG's at the very beginning and if I want more, most of the time you'll have to pay for yourself. I did not do that up to now, but visited 3 neuromuscle ambulances and one als ambulance. Only the first one did that EMG, the others did not. Just clinicals. The als ambulance ruled out als to 100% in their report - without doing an EMG. I think they wouldn't have ben so clear if it can be stated just on the basics of follow up EMG. I am just saying this for the peace of mind for all of those, having just one EMG in their history. But it is very interesting to learn to know about that woman whith a 25 year of history with als. I do myself know a women, who had als for about 20 years. She did not see a doctor until the close end..(which might have last a year or so getting worse). Thank you for that post!

 

[RedKnight]

German I'm in the same boat as you my friend. I had two EMGs at he first and the the first performed was only of my arm and neck not as of extensive as my second one. That was 5 months ago and both were clean and the my doctors say the same thing if you have a good clinical than a EMG is not necessary you know. I'm just freaking out cause my right hand is acting up and has been for awhile like weakness and tiring out quickly I get a burning sensation in the back of my shoulder blade very fast it's troubling it's scaring the *beep* out of me right now. Hope it's nothing sinister I'm 6 months in.

 

[Deutsche]

Dear RedKnight,well, I am in my 11th month of fasciculations and have a lot of symptoms behind me. Even temporary weakness in my left hand due to temporary muscle reduction (I could build up the strenth again), even with massive swallowing problems in the beginning (I was even in hospital for I could not eat and drink, I got an infusion and was thinking the end is near....really! And it was not.), and with pain, numbness, other sensations (for about 2 years know on the whole). And even with all those symptoms they ruled me out of having als, more than once. In fact due to my symptoms, saying that pain, sensations and numbness, it is definitely s.th. else. I 've learned that als doesn't come with pain and sensible feelings. .My second EMG was in every muscle I can imagine. even my back and nerve routes. With that the neuros think, there is no need of a further one, though it was in my first month of twitching. Now I am heading my one year mark, I still have no real weakness, but still a lot of symptoms. Meanwhile it seems that in my case a lot of symptoms come from hashimoto, which was not so obvious because my values were in the normal range. But it was somehow subclinical and I can imagine that some others might suffer from it without noticing. My neuro said "Hashimoto" is the second most reason for fasciculations and that there are very very much reasons for it furthermore...Actually I am also checked of neuro-borreliose (because one titer was positive.) I still have to wait on the outcome of westernblood. As you can see there are so many reasons for those symptoms which at the first glance looked as I am having als...it was so obvious. And now I am better. So it's not. Maybe this is a comfort for all with those weird symptoms. I think our mind gets very narrow in this one direction...We should really consider, that we can have a lot of other reasons. Or just bfs (which is not so wellknown here in Germany).

 

[XinaMae535]

Hi German,The first neuro, whom I saw twice in Düsseldorf, she only did a clinical twice and the second time a nerve test, but never an EMG. That was typical I think for a German neuro. I went to a different neuro for a 2nd opinion (recommended from my orthopedic doctor) and he did an EMG on me right away and ruled out ALS in his Report. I started twitching in July last year, so almost 1 full year for me, and then so my EMG was at my 11th month after twitching.One Thing to note: The Video is of a doctor from the Mayo Clinic in the US. It is a highly specialized type of Hospital, so their procedures there are probably different even from the usual procedures in many other places in the US. I tried to just take his expert opinion on how symptoms present themselves and what tests he/they at the Mayo Clinic see as important. I am sorry for all of your (and RedKnight's symptoms). It does Sound like you have a lot behind you. "toi toi toi" that the worst is behind you!