Bulbar ALS

[Neix]

Hello everybody, I hope you can help me. We are from Germany, but I was recommended to register on this forum.

My father has had the suspected diagnosis of bulbar-type ALS since October. He has had speech disorders since August after dental treatment. After these speech disorders did not resolve, he went to the dentist again, but it was said that the treatment did not trigger the speech disorder. An irritable fibroid was found in the left cheek pouch, which was removed.

After still not getting better, he went to a neurologist who checked his reflexes and found hyperreflexia and fasciculations. He referred to a hospital. There an EMG, a CT, an MEP and a nerve water examination were done. Everything was inconspicuous, except for the EMG. In his right upper arm there was spontaneous pathological activity with fasciculations, fibrillations and positive sharp waves. In his left forearm pathological spontaneous activity with fasciculations and spontaneous activity. The rest of the examined body parts were normal. The only thing that wasn't done is an MRI.

Is there a way to find something there that is causing his symptoms? We don't want to burden my father with unnecessary examinations. He is meanwhile in a deep depression and has gone abroad to his family because he doesn't want to burden us and we suffer with him. It is the hardest time of our life. You can probably all understand me.

I did a lot of research and there is a whole list of ALS mimics. Couldn't it be myasthenia or something that can be healed. Fortunately, no further symptoms have appeared since his examinations. I also think maybe some of the symptoms were caused by his depression and he is imagining it. At first the doctor asked if he had difficulty swallowing and he said no. During the next examination he said he had difficulty swallowing and now he says he can eat and drink normally. He wasn't sure about several symptoms and I think a lot is caused by the panic. He is very afraid of losing his language.

Is there hope? Can he have anything other than ALS and maybe the MRI can save us? If it really is an ALS, how do you see the hope for a soon future drug that can cure this disease? I've read about AMX0035 and that you can buy the two components yourself. Do you have experience with it? Could it help my dad?

Thanks for your help and best regards Nesle

 

[lgelb]

Hi Nesle,

If you can post the EMG without his details, we could be more helpful. I am also not clear what his current speech is like, and are there any issues that have persisted since that time?

Best,
Laurie

 

[Neix]

Yes of course. It's in German, but I hope it can help anyway. The language is indistinct. Not nasal or quieter. But with some words you have to listen carefully because some letters are not pronounced clearly. His symptoms since then have been fasciculations, speech and fatigue. Otherwise nothing has been added yet.

 

[Neix]

These are the results. Thanks for your help!!

 

[Nikki J]

I am sorry you had to find us. It does seem like ALS unfortunately. He has bulbar symptoms and an emg consistent with ALS even in his asymptomatic? upper extremity.
it is true that we usually have mris instead of CTs but I can’t think of anything they would be likely to find that would account of the above

I think his experience of having new symptoms after diagnosis that then go away is common. It happened to me. I was convinced the weakness had spread but it hadn’t yet done so.

unfortunately amylyx is no cure. It seems to slow disease but not reverse. we have threads in research about it and more people are getting the prescription part now. If your dad is willing to try it find put if it is available there. Another drug that can temporarily help bulbar is Nuedexta but I don’t think it is available there

sorry

 

[affected]

I'm sorry you are joining us and that your father is going through this.

 

[Neix]

Thanks for your help. I’m glad that there are people who understand this heartbroken situation. I know I might sound stupid, because I don’t accept the diagnosis. But I heard about the ALS Mimics. Isn’t there any chance that my father has one of these ? I red that Myasthenia Gravis can also start with bulbar symptoms. Thanks for your patience with me.

 

[affected]

Neix, denial is a part of the shock of the early months. Of course we want it to be anything else but this.
I think you need to discuss this frankly with his doctors if you are not 100% sure as only they can give you clear direction on his particular case.
My husband had bulbar onset, and I know we chased it being anything else until we couldn't and were officially diagnosed.