Confused and worried

[rachelg]

Hello

I don't even know if I am in the right place or if I should be here.

My husband has been told he has bulbar palsy.

He is 48. He started slurring his speech about 6/7 months ago. After visiting his GP he was referred to a neurologist.

The neurologist admitted him to hospital for tests.

We were told that originally he thought my husband had a brain tumour but ruled this out. He had various tests including an MRI scan. All clear.

We were told that he had possibly had a brain infection and that he should recover and improve.

Recently my husband started struggling to eat. He finds it very hard to chew food. Food gets left in his mouth and he is unable to move his tongue properly to move the food around. He constantly has to wipe his mouth and drinking liquids takes full concentration to stop it coming out of the corners of his mouth.

He started speech theraphy and his therapist said that he needed to see the neurologist again as she was worried that he was getting worse and his tongue had fasciculations.

We visitied the new neurologist two weeks ago. He throughly examined my husband and when he was getting dressed said to me that he was very anxious and worried that he may not be able to do anything for him. He has to have some type of nerve conduction, electro testing. The referral will be dealt with as an emergency.

Sometimes my husbands face seems to shake, he chokes when eating. He says his face and jaw feel so heavy.

I have read as much as I can about this and it seems to lead me to MND. I am worried.

Should I be? Can Bulbar Palsy be a sympton of something other than MND?

We are waiting for the test date.

Thanks.

 

[rose]

Hi rachelg,

I'm sorry your husband is going through this. Bulbar palsy can be caused by things other than MND. Palsy means weakness, and bulbar refers to where the weakness originates from, the bulbar section of the brain stem. I do not know how commonly there are other reasons for bulbar weakness than MND though.

If he has not had a specialized type of mri of just his brain stem, I would insist on it. My neurologist called it a "coned down" MRI, but I'm sure its not the technical name. Just a general MRI of the head/brain is not specific enough to the bulbar region.

Fairly recently there was another forum member who's husband was diagnosed with PBP without benefit of enough testing, and it was discovered a few months later that it was actually caused by oral cancer. Which of course is not a good thing, but is a treatable condition, and valuable time had been passing.

Also, your husband would benefit from a modified barium swallow study. A lot of information can be gotten from this test, it is an evaluation that will show where the weakness or weaknesses are that cause his swallowing difficulties. It would be done by a speech pathologist (different than a speech therapist) and most likely at a major hospital, not a radiology center.

The testing you referred to, the EMG, will be very helpful in determining the cause for his weakness, but its the swallow study that will evaluate how serious his swallowing problems are, so they're both really important to have done.

Welcome to the forum, please know you're not alone in this.

 

[rachelg]

Thank you Rose. My husband is having further tests on the 6th and we are hopeful for some news shortly after.

I will let you know.

Thanks again.

 

[rachelg]

Barium Swallow

My husband Mark had his modified Barium swallow and we got the results today.

Moderate oral and pharyngeal dysphagia. Difficulty maintaining lingual-velum seal. Reduced tongue elevation and strength in addition to a greater effort to transport the bolus posteriorly in order to trigger a swallow. Residue of liquid bolus on the tongue blade.

Reduced base retraction causing bolus to enter velleculae. Reduced pharyngeal constriction.

I guess this isn't fantastic news but feel it is better than a summary of severe dysphagia.

My husband has started choking on syrupy liquids - mainly his medication - lately and his choking causes him to black out - I spoke with his GP today who said that following the swallow report he is not suprised to hear this and that Mark should make sure he is sat down when he eats or takes his medication incase of the blacking out - blacking out is a defense mechanism!

Seems unacceptable to me - what do you think?

 

[rose]

Rachel,

The whole black out thing seems weird. I wonder if it has to do with the trigger of the Vagus nerve? That nerve (10th cranial) is the one responsible for a lot of the swallow mechanism, but, there is also a benign reflex called "Vasovagal Syncope". Its from over stimulation of the vagus nerve. This may be what the doctor was referring to, and if that is the case, he should have clarified it with you, not just said, in effect, no worries! ...

Back when my daughter was in junior high school, she fainted one time when in the shower, and the doctor explained that if she'd gotten too warm, or the shower water stream was hitting her at just a certain place on her neck, that it could trigger this and it was harmless (other than that when she fainted she fell out of the shower and hit her head on a radiator!)

if you google Vasovagal Syncope, you can learn more about it. I'm not sure if that is what his GP was referring to....

His swallow study results don't sound awful, and as you guys already knew there were problems, its good to know just what they are. Make sure he keeps going back for follow up ones now that he has a base line study done. The remarks about the residual in his mouth, this is one of the things when I had my first one done that so surprised me. It had been such a gradual decline in my swallow efficiency, I'd forgotten there was a time that I could swallow something and it all would go down. My last test showed it took me 3-4 swallows to clear it out. I think I still would have been unaware it was a problem (that part of it) if they hadn't seen it, I knew it was happening, it just didn't register is all. :roll:

good luck to you guys, keep us posted, and just for the record, I think your doc, even if excellent, could stand to be a little more forthcoming with explaining his comments!

 

[rachelg]

Hi Rose

Thanks for your reply.

Yes the doctor did say is was a Vasovagal attack so it seems it is a defense response.

Mark is down to have regular swallow assesments and they want to keep an eye on his weight as he has lost about 25 pounds since christmas. Fortunately at this time Mark is quite overweight so feels that this is "Gods diet" but we are aware that we will have to concentrate more on maintaining his current weight - banana thickshakes are helping.

Mark realises now that he has to concentrate on swallowing when he drinks as well as when eating. He did say that sometimes he forgets for a moment that there is something wrong.

We should be seeing his neurologist soon so we are hopeful for some answers and solutions from him. He had his Nerve conduction studies and EMG last week so we are going to be meeting up to discuss the results.

I will keep you posted.

Thanks for your help.

 

[Marjorie R. Wilcox]

Just to let you know we are following along and very interested.