Question for PALS with bulbar onset

[eva]

(previous thread here)

I will be very thankfull if some of you will share your experience with diagnosis of bulbar als.
Because of twitches , hand weakness and tongue fasciculations I was reffered in September to neuromuscular specialist.
My symptoms so far: bodywide twitches, weakness and slight atrophy in left hand, tongue fasciculations and tongue weakness. I slurr my words several times a day ( it sounds like one letter from word is not pronounced ,my tongue is tired after few sentences ,I need to take break, when I speek few sentences my speech is slowned down in the end and I lisp sometimes).
Tongue fasciculations started on June, since July my bite changed, my right molars teeth are touching during speach and they bite my cheek and tongue on right side.It is very annoying for me.
My emg was clean ( emg of masseter was done on July) and emg of hands, arms ,legs in august-clean. As I understood from previous post, for upper motor dominant als or for bulbar onset emg can be clean. But on clinical exam,my reflexes were OK .I am very confused now because ALS is still not excluded, they are making lot of test to exclude another diseases.
Moreover,if I have fasciculations it is sign of lower motor neurons.
MG was excluded.
If your emg was clean et the beginning, did you have at least some clinical signs ( hyperreflexy or no reflexes)?
Many thanks

 

[eva]

Hello,
I had my emg repeated and the result was PSW and fasciculations in thighs and calfs ( In thighs amplitutes were OK,but in calfs everything was abnormal,Emg of arms and hands also detected fasciculations and PSW, in right hand also fibrilations. Neuromuscular specialist noted hand weakness and neck weakness. I have also visible atrophy in arm , forearm and hand. Emg of my tongue revelaed fasciculations only.
I am really scared now because it seems for fast progression since august when my emg was clean ( but I felt slight weakness already and speech issues). My bloodwork for autoimune diseases,thyroid were OK.MRI of brain OK. I am ordered for muscle biopsy and Lyme test now but I really affraid of ALS.
I tried to search for Mimics of ALS but I think I can exclude most of them because of bulbar involment. I hadn't any upper neuron signs during clinical exam and my reflexes were OK.
May I ask you from your experience, does it sound like ALS? Are reflexes always abnormal or they can be normal in early stage with absent upper motor neurons signs on clinical exam? ( I have cramps months ago but not now).
Many thanks

 

[Nikki J]

Hi what you say about the emg sounds concerning. If you could post the emg itself ( with name removed) we could be more definite. For ALS you technically need upper motor neuron signs to back up the lower ones but some people are lower motor dominant and only show lower signs at first A purist diagnostician will call this PMA. It is at the other end of the spectrum from PLS

I am sorry it is looking this way