Husband concerend about wife

[JoelClifton]

She feels the same way about the whole Lyme thing as well. just from her looking at the support group and all the treatments they do she mentioned she doesnt want to get caught in the "well if nothing else was found lets say its lyme and treat to get money for that." I haven't looked to much on Lyme because things have been so fcused on mainly her tongue and all the fasciculations which Lyme just didnt seem too much into that. does anyone know what the starting symptoms for bulbar als would present as? I have researched that some people could preceed ALS with Lupus or Lyme and then overlap. I fear she started with something and now has ended with Bulbar ALS.

 

[JoelClifton]

I was just reading over older post of people asking about als symptoms and several people stated " if you only twitch during rest its not als" If her tongue fasciculates when also sticking it out is that bad then?

 

[Nikki J]

No -tongue twitches when sticking out the tongue are normal. Fasciculations with tongue at rest might prompt a look at ALS if combined with real bulbar symptoms but they are usually found to be benign too.

 

[affected]

Twitching on its own means nothing, even in the tongue.

The swallowing issues are not that it feels hard to swallow, or that they feel they are talking differently. What happens is the person begins to have true difficulty swallowing, usually first with liquids. They don't have to swallow a couple of times, they begin to choke when swallowing. With the voice, they begin to sound like they are drunk and people start to comment.

If someone says they feel trouble swallowing, and feel different talking it's a different matter. My Chris for example would choke on water and sounded drunk, but he felt completely normal, his tongue was simply failing.

I hope you get some answers soon.

 

[JoelClifton]

Thank you so much for your response. I am very sorry for your loss and as a spouse to see your loved one go through anything affects you as well. Devastating that any of us have to be on this site.
For her swallowing She fails at the initiation of swallowing. So the reflex to start the Swallow doesn't happen then she stops and tries again and at that point it would work. This is not every Swallow and happens intermittently.
Her tongue is a problem to her 24/7. She has been miserable. She feels her muscles on the bottom side of tongue giving her issues like there is tightening down there constantly and then went we inspect the tongue we see small fasciculation at rest but not crazy ones. Then when she sticks her tongue out it's like ripples every time. If I tell her to raise her tongue it shakes like fatigued and fasciculate. When she moves to side it it the same. He tongue all together is just fatigued and she looks forward to bed every night to rest it. Then when she wakes up it's stiff from sitting there all night.

 

[Atsugi]

For what it's worth, I just don't see any indication of ALS in your posts.

I won't point you towards any other diagnosis. But I do want to know how that appointment with the psychiatrist went. There's just too much anxiety being described to rule that out.

Your relationship with the whole medical community seems contentious. You write about doctors blowing you off. Also, you don't seem to have confidence in your doctors. But you are doing lots of reading, and your writing seems to say that you trust the internet more than the doctors.

You wrote about seeking out many specialists. Is an Internal Medicine doctor directing this health investigation, or are you guys running this investigation yourselves?

 

[affected]

Sorry if you have said this already and I missed it - but has she seen a speech pathologist and had a barium swallow study done?

 

[JoelClifton]

She did have a modified Barium Swallow done and it showed some premature spilling on base of tongue and just a slight swallowing delay. No aspiration. The pathologist said she can see the tongue fasciculations and scared her more by saying those are always neurological and never benign.

The primary care isn't too involved other then sending her off to specialist. The reason we are concerned with the neurologist is because he did not inspect her tongue. She had emailed him to please look at it and emailed what the pathologist told her and the day before her appointment with the neurologist they called her and cancelled it and said I didn't see anything so we suggest you seek care elsewhere. Then referred her out but she can't get in until over a month away. I do believe with anyone who has to go through something scary like this would naturally be anxious. Not having answers when you know something isn't work right is frustrating.

Her rheumatologist looks at her legs and says "I don't see fasciculations" and she was wearing windbreaker pants so of course wouldn't see them.

She did her fair share of researching and reading and I told her to stay off of sites and here I am on them myslef. I'm scared too for my wife.

I don't trust random stories on the internet, but I do trust people who have similar stories, their own experiences and who can relate