Could this be bulbar als?

[Viccxx]

Hello

I am very worried that I have bulbar onset ALS. I have been having speech problems for 16 months now. At first it was hoarseness but it developed into dysarthria a few weeks after my father suddenly passed away. About the same time as this my handwriting started to deteriorate - it was like I knew what to do in my head but my hands would not cooperate and just felt odd. My speech did improve after this up until Christmas. Then I had a virus and it significantly deteriorated. My soft palate has stopped working properly so I am hypernasal and very dysarthritic again to the point where I can’t be easily understood and i am using an app to communicate. My swallowing is now affected, my tongue is sluggish and it feels like my face muscles are seizing up.My hands are still odd and my arms are heavy and it takes longer for me to do simple things like dressing in the morning. My balance is also off. I also have minor twitching in my hands and randomly all over my body but it is slight and does not impact my daily activities.

I saw a neurologist in February and he did a physical examination that was normal apart from sluggish tongue, no movement in my soft palate and some hyper reflexivity. Despite telling me it was fine, the neurologist referred me for a nerve conduction and emg tests and put on the letter suspected mmd. These test results were clear, but at my follow up appointment he told me he had suspected mnd/als all along! I have had a head mri that only showed some parietal atrophy unusual for my age (I’m 47) and I am waiting for the results of a cervical mri.

I guess I just want to know if any of this sounds familiar to anyone. I am starting to distrust doctors because they say one thing to my face and then write worrying things on referral letters that I get copies of! I just want someone to be straight with me so I know what I am facing.

I am sorry for the long post and thank you for reading

 

[lgelb]

Did the EMG include any bulbar muscles?

The parietal atrophy raises concerns for brain disease (which ALS is not), including Parkinson's/dementia. I would ask straight up what the current differentials are and how they will be tested for. I certainly agree you have the right to understand the diagnostic process here.

 

[Viccxx]

Thank you for your reply. They tested my jaw on the right hand side and under my chin and both were fine. The neurologist did mention repeating the nerve conduction and emg tests in a few months just to be sure. But their communication so far has been terrible. For example I received a letter out of the blue a couple of weeks ago from our local hospice (I am based in the uk) telling me I had been referred to the “mnd and neuropalliative care specialist” That really frightened me as I wondered what they weren’t telling me! Now that I understand her role I am a bit more reassured but I can’t believe I wasn’t warned.

And I agree about the atrophy, although I have no other symptoms relating to Parkinson’s or dementia. The neurologist seemed quite dismissive of it.