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Aswanson

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Joined
Mar 1, 2016
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33
Reason
CALS
Country
US
State
NH
City
Wakefield
Hello,

I want to thank you all for taking the time to read my post. I've been reading the forum for a while now and have found myself getting more confused. I have read the stickies and realize we need to wait for all the proper testing for a diagnosis, but am hoping someone can make suggestions.

I'm writing in regards to my 56 yr old husband. I ended up rushing him to the ER Jan 29 & he stayed until Feb 2nd. The reason I had brought him was because of choking on liquids/ foods and speech problems and it was getting bad- but it started before this

-About 6-9 months ago he started having an excess of saliva. He would drool, or when
he would talk it would come out.
-not long after that he would start choking on the saliva at night.
- about 3-4 months ago he started clearing his throat a lot during conversations and
His voice would fade out in the middle of the sentence
- about 2 months ago he started coughing while he ate ; then it turned to choking on
Liquids, then foods
- roughly around the same time I noticed he would mumble a word or it would be
Mushy ...here and there, but then by the 3rd week of this I noticed it getting slurry.
A little at first, then full blown within the week.

He also had feelings that something was stuck in his throat, a constant phlegm feeling in the back of his throat, feeling that food was getting stuck in/ could feel food moving down chest area.

When he got set-up in the hospital, they did ekg, cat of his throat/chest, mri of head.
EKG- normal, CAT - normal, MRI- showed he had a mini stroke roughly 1-2 weeks prior to ER entry. Dr said it was "so very small- the tiniest of strokes", but it was in the area that effects swallow/speech.... she said it shouldn't have affected him, but I don't know.
He also had a bunch of work ups to try and find the cause of the stroke - to no avail.
He had a barium swallow study and they found his esophagus isn't contracting/ spasming the way it should work the food down. On day 4 he had a swallow study and he wasn't at risk for aspiration, but had a hard time eating certain foods/ liquids still.

They tested him for MG (just the 1 blood test, forget the name -was negative )
Put him on mestinon and discharged.

Here we are 5-6 weeks later....speech is getting worse ( constant slur, tongue doesn't form some letters, excess saliva/drooling, wet nasal sound, etc)
Has been able to eat, but is still choking on liquids (doesn't go back into nose), is only eating softer foods though and has lost 16 lbs thus far. He said his jaws get tired too.
Is exhausted...he is talking about a temp medical leave because he is so tired and gets this mental exhaustion driving home from work and let's not mention the difficulty talking to clients.

His original neuro said mestinon seems to be working even though neg test, not edefinitive and haven't done any further testing. We have a second opinion on 3-17 , but would appreciate any thoughts as there are so many conflicting and secondary issues.

I appreciate very much and apologize for the length of the post...

Amy
 
Aswanson, I'm glad you included good details.

You came here because you're worried about bulbar ALS. I think there are other things that could do this. But either way, you need to get this fixed, for sure. Don't leap right into ALS.

Probably someone much smarter than me will give a better answer soon.
 
I wonder why he hasn't had an EMG?

I would be concerned, though the MRI showed a mini stroke which could be the cause.
 
Thank you for your response Mike.

I am very worried. The neurologist at the hospital had said it was "on her list," but wanted to go the MG route first and to us they don't appear to really testing for anything further other than to do with the stroke.
 
Thank you for responding Tillie....
I couldn't answer that. He had just about every other test in the hospital...but I think they were focused on trying to find route cause for stroke at that point. I am hoping going to the bigger hospital & seeing the doctors for 2nd opinion he will get further testings.
Originally at the hospital thought it was all stroke related, but then they changed their mind to MG or neurological because he started presenting months before the stroke happened. They said it may have exacerbated the swallowing issue, but in his swallow tests they found no areas damaged by the stroke itself (throat/jaw,etc) so it's so confusing.

Amy
 
He certainly needs an EMG and a fresh diagnostic perspective. Where is the second opinion? You are within striking distance of Boston, e.g. MGH, and I would seriously consider going there.

Best,
Laurie
 
Thanks for your response Laurie. I am going to insist ...or rather have him insist on an EMG if they don't mention one.

He chose Dartmouth in Hanover/Lebanon....not my first choice, but he had seen a neuro there about 6 yrs ago for some other stuff. It's about the same distance either way - we go to MEEI for our daughter all the time, so I'm not sure why he didn't chose MGH.

Amy
 
Check w/ Dartmouth -- they often prefer to do their own test, so no point in getting two EMGs in short succession.
 
I will, thank you Laurie. We go in a couple weeks for that second consult, so we will also see what they have in mind to do further.

Amy
 
Re: Hoping to gain some insight~ Pseudo bulbar palsy update

I'm not sure who is still reading, but I wanted to give a brief update on the second opinion that was started today. Over the past week the original neuro has changed his mestinon a couple times in hopes of change, but no changes. The new neuro today was wonderful. He told us hubby didn't have MG as he didn't even have all the symptoms and the meds have not improved his symptoms, but speech and saliva are getting worse in fact.
He did a work up that none of the other neuros have done- he tested for reflex on his chin, which showed he had very brisk chin reflexes. When he was looking at his tongue, the neuro was looking for a while and intently, but didn't say anything. My husbands tongue looked like a million worms or full of electric eels....it was just all over, even at rest. When asked to raise it to the roof of his mouth he couldn't.
The new neuro was amazed he hadn't had any tests for anything other than to find the cause of his stroke. He said he had pseudo bulbar palsy and would be in touch to do further testing.

I guess until all the testing is done and back this is what we have so far. Thank you all for your help earlier
Amy
 
I'm glad you got a thorough work-up from a good neurologist. Good luck with the testing to follow. Stay in touch.
 
Thank you Mike ...
(Thank you for deleting the duplicate post as well....I couldn't figure out how to do that!)

Amy
 
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