PLS becomes ALS?

[Cammarak]

Hey! I was diagnosed initially with ALS in 2013--after testing and 2nd and 3rd opinions, I was more correctly diagnosed with PLS. Last year after a follow up EMG, I was told that 75% of people "progress" to an ALS diagnosis within 2 years. I was very fortunate to stay in the PLS category after that round of testing. I have another follow up EMG and respiratory study tomorrow because of some concerns with my core muscles and breathing. My question is, has anyone been, or heard of anyone having been, diagnosed with ALS after three years of a PLS diagnosis.? My neurosurgeon (the doctor who originally diagnosed ALS) insists it is all the same disease and it will end up being ALS given enough time. (My neurologist says PLS is its own disease). I'm 50 now and it's been almost four years since the original diagnosis.

 

[Lkaibel]

This is a medical debate in progress, and as you see you have found two doctors who disagree with each other on PLS/ALS. I would suggest to anyone with any motor neuron dicease to live in the now and don't get to caught up in what may be. An ALS diagnosis will or will not reveal itself in time. I know it sucks but honestly we feel so much better concentrating on today.

For the record, our own Dr who is a reknowned ALS specialist feels the jury is still out on LMN and PLS. In any case, you have slower progression in either case at least for a whole than a straight out of the box ALS diagnosis. There is a PALS out there who posts a blog on his " ALS Varient", still considered terminal but hey 6 years post Dx he can still do a lot at a time many with ALS are completely disabled or passed on.

 

[affected]

What did the follow up EMG show?

 

[lgelb]

Studies vary since populations available for study vary. Some cases of "conversion" 10 years or more post-diagnosis have been published. You could argue they were misdiagnosed to start with, but anyway...it's a circular argument. You can find PubMed links in related threads (use the search function).

Bottom line: you may already have LMN and UMN dysfunction and not know it. Or you may add LMN later. Or not. Live each day.

Best,
Laurie

 

[Cammarak]

My luck held out for this round,also. They noticed no real difference between this EMG and last year's. It's not official yet, but my doctor felt confident enough about the results to give me the news right there instead of making me wait until December. I feel extremely fortunate.