May not be ALS but still MND

[Boora65]

I recently read a post from a 38 year old guy who was concerned he may have Bulbar ALS despite having 2 clean EMG’s and no clinical signs. He was shut down and basically told to P off by a moderator. I think this is a bit of a disgrace and shows why nobody should be definitive when it comes to this disease. It is unlikely he has the classic ALS as we know it, but he could have PLS or upper motor neuron dominant ALS. I had 5 clean EMG’s over a 3 year period and no clinical signs apart from fasciculations in my tongue and was told by two specialists I didn’t have MND. Eventually on my 6th EMG very minor anomalies were found and I was diagnosed with either upper motor dominant ALS or PLS (which some argue is the same disease while others say they are seperate diseases). I think rather than shutting someone down, we need to expand our horizons and be open to people’s concerns. Being essentially called the little boy who cried wolf doesn’t help anyone

 

[Clearwater AL]

Boora, to help give your post some creditability... who and where did having 6 (six) EMGs which
itself is rare of a rare disease. Also helpful would be if you would post your last EMG report with the
Summary/Conclusion at the bottom which determined your confirmed diagnosis making you
eligible for possible assistance in AU. Member "Affected" may be somewhat familiar with.

You sort of went off on us.

it's ok to post the thread title of the 38 year old who was shut down and a moderator told him to P off...
(your words) so we can refer to it in reference.

 

[Boora65]

Firstly I don’t need to give credibility, I’m only posting on here to help others know that there are very different experiences with this disease. Also how do you know who is good and who is bad at doing EMG’s, you only have your own experience to count on. However, given you asked my first EMG was done on 2/9/15 by A/Professor Tim Day from Royal Melbourne hospital in Australia. My second was also done by Tim Day on 28/4/16. My third was done on the 10/11/16 by A/Professor Lyn Kiers. My fourth was done on 20/11/17 again by Tom Day. My fifth was done on 19/3/18 by Dr Seth Pullman at Columbia University in NYC. All of these were normal and were done after I noticed fasciculations in my tongue and difficulty speaking. All EMG’s included a needle in my tongue. My final (6th) EMG was done on 19/3/18 again by Tim Day. His conclusion were;
“This study demonstrates mild abnormalities in a scattered distribution which are suggestive of some patchy LMN disorder, but not diagnostic of anterior horn cell disease. Nonetheless, there are no other indications of motor neuropathy or radiculopathy to account for the excess fasciculations. Very indolent anterior horn cell disease remains possible however.”
Now as I said I may not have ALS but I definitely do have some sort of MND. Since that last EMG my voice has now completely gone and despite having the full use of all limbs, I have regular cramps and twitches in most muscles. I count myself as being very lucky, but I still have MND despite obviously having a much milder case than most others.

 

[lgelb]

Yup, ALS and other MND variants, along with tons of other diseases, are occasionally misdiagnosed as something else. When a condition is atypically slow to manifest, like yours, that's most often the reason. Since your last edx report was only general and provisional, I trust you are being followed to rule out something treatable.

So we, too, will miss those rare wild cards.

That doesn't zero out the value of the knowledge base here -- for the many worried well that stop by every year, and for the additional thousands who have something that isn't ALS, and in chasing ALS against the evidence, further risk their health.

I'm sorry to hear that you have a slowly progressive LMND, and I hope your slow course continues. It's easy to block the Could It Be forum from your forum view.

Best,
Laurie

 

[KimT]

I’m sorry you went through so much on your diagnostic path. I had a similar situation in that my very first EMG looked like classic ALS but I had no clinical weakness, according to Mayo. I felt weaker in several muscles and even had atrophy in my left hand. So my diagnoses was “possible” from December to the following August. Johns Hopkins found some clinical weakness in a few areas but I was still considered “possible.” Then it went to probable. Now I have clinical weakness and atrophy in all four limbs. I progressed very slow. So, yes, we’re all different.

I think the moderators do a good job but I’ve seen some horrible posts from some members toward people seeking answers. It would be better to just send a private message and close their post than belittle them on a forum. Even if a person is experiencing health anxiety there is a better way to help them get on their way than to humiliate them.

So, I agree with you and I understand why you posted.

I wish you a continued slow progression.

 

[Clearwater AL]

Well, anyone who may not like the flavor of this forum or disagrees with the vast ALS knowledge base
here... there's ALSTDI, Facebook and other sites where one may find more agreeable/comfortable.
If one is going to refer to someone else's encounter here... post the title of that thread so we can
refer to it also.

It's good you have had EMGs from AU to NYC then back to AU for a determination.
Dr. Day in AU was able to finally help you where Dr. Seth Pullman at Columbia University in NYC didn't.

"All EMG’s included a needle in my tongue."
(Sorry all your needle EMGs were done on your tongue, I'm sure that wasn't very comfortable.)

I too hope your progression is slow from 2018 to now.

 

[Boora65]

Thanks Kim I appreciate your comments. I only posted as I’ve seen to many times people be essentially told “if you have a clean EMG it’s not ALS” so move on and stop bothering us, whereas we all know there are numerous types of MND it could be if not classic ALS. Wishing you the best for the future and hopefully very slow progression.