Interviewing Neurologists - No Sugar Coating

[Gracer]

yeee, Mario, I just meant that OCD/GAD is a serious thing too but other than MND Fortunately seldom fatal. Definitely not like ALS

 

[veryconfident321]

Question I see others and myself have been wondering about Have we ever had people who had bfs and then were later diagnosed with another Nero or muscle diease? Thanks

 

[XinaMae535]

Thanks Jason for clarifying that. I understand the difference now, thanks!

 

[Keiran]

Just an example for the contradictory statements which bother me so much:

 

[GamerSociety1509]

Rothaar, if you are referring to clinicals vs EMG. I don't really believe EMG is necessary to rule out ALS. My understanding is that EMG's are used to CONFIRM ALS. The clinical is used to check for suspicious clinical changes.That is why many neuro's won't bother with the EMG or will only do it to make the patient feel better. My neurologist said it was a waste of time and he is very highly regarded.

 

[MarioMasher]

Yep no one here has ever really needed an EMG. That is one of the other misconceptions around this place. An EMG doesn't really solve anything or fix anything or tell you anything. It's mainly just done so the doctor will get a patient to shut up. And it really doesn't even do that for the most part with BFS people, because most of the people who get one will then go get a second (or third) one later. This is why I advise people not even to bother going down the EMG path. It is just a big waste of money that you could be spending on other stuff, like vacations or your family.

 

[Keiran]

Hi Gamindsoc,Hi Mario,thank you very much for your answers. That's a great relief. There seem to be to opposite schools of thought when it comes to the role of EMG's (TwitchyMD obviously belongs to the other school). But I think you are right, especially because your opinion seems to be the standard opinion among neurologists as well.I guess, most neurologists in Europe don't want do EMG's after a clean clinical, because it's just not the medical standard procedure according to the relevant guidelines. In the US it may be different, albeit probably not so much because of medical reasons, but they want to cover their backs.

 

[christinasgirl123]

Most docs here (Emilyomousey) will not order an EMG for fasciculations, because that is simply overkill. Fasciculations without any other problems, have no diagnostric value. The EMG specialist in Mannheim University hospital even has benign fasciculations himself (and was able to show it) , and never had the idea to get an EMG because of that. His simple answer: because fasciculations are damned common and are not a sign of anything bad. He is working for the ALS group there and has done thousands of EMGs, and many of them on ALS patients. He never saw a patient whose fasciculations were a precursor for MND. Either they accompanied weakness, or the patient did not have ALS.They only did the EMG because I had numbness, extreme hyperreflexia and terrible pain and stiffness and tremors. I was so shaky I could hardly walk. Honestly, they did not even care about the fasciculations.

 

[XinaMae535]

I am sorry Chrissi, to hear you had those issues. I hope you are feeling better by now.I am also in Germany by the way (near Düsseldorf). Although I am somewhat a new neurology patient, I have also felt like the doctors find EMGs overkill (and in general with tests, they do them when they feel absolutely necessary). What I find is a downside to this is they treat you based on what they think you have, without having a real diagnostic image first, and as long as the treatment helps, then they will keep doing it that way, especially for younger patients (for cost purposes). One of my ex primary care doctors even told me that. Turns out, I had 2 herniated discs for a long time and they just kept giving me shots in my shoulder/neck. After I was properly diagnosed (MRI in a hospital, where I went one day when I couldn't feel my arm), I received rehabilitation and finally feel real long-term relief now.THIS:"He is working for the ALS group there and has done thousands of EMGs, and many of them on ALS patients. He never saw a patient whose fasciculations were a precursor for MND. Either they accompanied weakness, or the patient did not have ALS."is great to know, very reassuring! Thanks for sharing!

 

[Keiran]

Hallo christinasgirl123,na dann erst einmal viele Grüße nach Monnem!And of course thank you the insight provided about EMG's and BFS. Makes me feel a lot more comfortable!