Help me , please.

[I need answers]

Our decent into hell began over a year ago. My husband had a severe case of the flu, he recovered , but His voice never did. It became progressively worst. We saw 2 ENT's , one discovered his false vocal cords didn't work at all.They recommended a speech therapist , no results.We then saw 2 nueroglists, one said he thought it was something with his tongue, no follow up test, no idea of what to do.The second nueroglist did numerous test, even a blood draw from the Mayo clinic. No AlS , ms , mystania gravis, he said he didn't know what it was, in the back of his mind he thinks it might be bulbar palsy , and he will see us in 4 months.My husband can't talk at all now , he has swallowing issues, and drolls, a lot.He feels OK , he washed both cars , and mowed the grass Sunday. Why don't the doctors help more? We are frighten . Sorry for the long post, but is this normal?

 

[Nikki J]

I have moved this since , as I understand what you wrote, you do not have any fixed diagnosis.

Neurological diagnoses can often be difficult and sometimes, painful as it is, they have to watch and see what happens over time.

I would encourage you though to seek an opinion from an ALS specialist

Even without a diagnosis if his swallowing issues are serious you may need to ask about a feeding tube

 

[I need answers]

Thank you Nikki, we are both just so frustrated. I really appreciate your reaching out.

 

[lgelb]

I'd go somewhere that can see him sooner than 4 mos., that's for sure. Have you been to UTSW and/or Baylor? I'd go to the one you haven't been to.

But Nikki is right, if he is in danger of choking or is eating/drinking less than he should, it is time to consider a feeding tube. Since his dx is not clear, this should be done in radiology, with fewer risks of aspiration/hypoxia during the procedure. He should also have pulmonary testing if not done already.

 

[Firefighter58]

Hello there, my diagnosis from start to finish took about two years. I agree with the girls, the idea of a feeding tube may be concerning but I can tell you from my own experience that it is a life saver, don't be afraid of it, and if or when it is not needed it can easily be removed. Good luck and keep us in the loop, we are all interested and concerned.
Al