Does this sound like bulbar Als?

[Concernfarther1]

Hello everyone- first i just want to say i appreciate anyone that responds to my post and reads my concerns. I want to hear what others might think as to what this could be. I’m a 39yr old male. My symptoms have been going on for two years. It started with balance issues, then speech issues. Speech would would be described not pronouncing words like i could. I get a lot of can you repeat that or what did you say. I do talk fast but since this started i feel my tongue is too large for my mouth now and it sits on my bottom teeth. I have a lot of ripples on the tongue and the sides as well now. My speech is just off and been like this for two years. I also have a lot of dizziness issues, and i do have anxiety from this as well. I have seen a neurologist right from the start. In two years i have had two ncv and emgs, 3 brain MRI’s, 1 cervical spine mri, in office examinations and a ssep test. My last emg was 12/22 so it’s been a year. Both have been clean except showing carpal tunnel in my hands. Worse in right than left. My brain MRI’s showed white matter in t2 which he said it’s nothing and my cervical showed i have cervical spondolytic myelopathy. So i do have a really bad neck that prob is causing my balance and dizziness issues. My concerns are really from my speech and dizziness that seems to just not go away. I now get nervous to even speak bc i know im gonna say words incorrectly and people won’t understand me the first time.

My question for all is my doctor said Als even bulbar als would have presented itself in my emgs and after two years i would be in different spot physically right now. I have read on here people that were diagnosed with bulbar after having 2-3 clean emgs and than it showing. I’m simply asking is that true? I know i should get als out of my head and move on to something else since my doctor said this isn’t als but every time i google speech issues , balance issues and dizziness it always says Als. Would it make sense to get another emg done since it’s been a year and do some more retesting or even see a different neurologist for their opinion?

Thanks for any input or guidance. Much appreciated

(Previous threads here and here.)

 

[ShiftKicker]

Hi there- sorry you are finding yourself back here and questioning what your neuro has told you. That kind of worry must be very difficult.

You state dizziness, which is not related to ALS. The person you should be asking about further exploratory testing is the neurologist who has been following you and tracking any changes. If you are struggling to believe the answers your neurologist has given you for why you are experiencing the symptoms you have, you could request an appointment with another. The time that has passed, the examinations you have received, and the emg tests all indicate ALS is not the trouble here. They have actually provided a diagnosis for you, and it is not ALS. Will another neuro reassure you?

The people here can only provide you with the most basic of information and would not argue with the neurologist, who has seen you in person. Dr Google is no replacement for in-person care- and it really sounds like you are unable to believe anyone when told ALS does not present in the way you say.

 

[Concernfarther1]

Thank you for your response. I am trying hard to believe the doctor and the test. Yes dr Google brings me right back to the same thing which is why i haven’t moved pass this for two years