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L4dybugg

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My husband goes to the hospital 10/22 to have those tests (swallow test, and the pulmonary function test) done. Will we be able to get the results that day, or will it take a while to get the results back?

My husband has not been feeling the tightness around his throat the last couple of days, thank the Lord. He did say that was coming and going. But, I have noticed that he is now pretty much constantly trying to clear his throat, like there is something hung in there.
There has been times in the past that he has chocked, and got strangled pretty bad. Sometimes just on his own saliva. It is scary.

The dr. at the Er took chest x-rays, and she said that his muscles around his lungs was wasting, I'm sure this can be caused by other things, but I was wondering if this happened to you, or anyone else with bulbar.

I know it is going to take some time to get his appointment to Nashville. I am concerned he might have another bad spell before we can get there. Any advice about bulbar that you can give me would be great.

Also if you don't care, to share your story of your bulbar symptoms how it all first started with you. And tell me more about aspiration.

They did put him on Mestinon to help with his strength. And so far nothing has helped with his muscle cramps and pain. Up to this point he is taking: Tramadol .

Lori
 
When he seems to have phelgm, sp? I can never find spellcheck on here and the funny thing is that I won several spelling bees as a child.

Anyways have him drink some cola, the bubbly seems to break it up......And ask the docs for a suction machine.....I used to turn Freddie on his side and cup my hand and do some percussion clapping on his back and that would break the mucus up...I hope this all works out for you.........I hate this damn disease...It breaks my heart to hear of people going through so much heart ache. I can relate because I deal with it everyday.
Just know that I am pulling for you!
Your Friend,
netty
 
Lori....

I'm going in reverse order here with your questions...

Tramadol.... my dad took it for pain, it was supposed to have less side effects than percocet class type drugs, but it didn't help him much, I don't think. (He did not have MND, I just remember this was one medication he was on)

Your husband could try drinking tonic water, It has quinine that will help with the cramps, and the bubbles will help if he has a phlegm problem. It comes in diet and regular.

If you can get him to concentrate when he eats, take a bite, take a drink, take a bite, take another sip, it will help him not choke. Also, leaning forward, and tilting his head forward should help. Straws are good (but men aren't crazy about straws sometimes)

It can be a problem eating a lot of bread or bulky food such as a steak, all at once, if his esophagus is slowed. It will just build up in his throat, and he'll feel like he's choking even if he's not.

If you notice that he's just getting more silent through out the day, not talking as much, its a pretty good indication that he's tired and really needs to rest....

Propping up at night to sleep is helpful.

RE: What you were told about muscle wasting around the lungs.... I think that this would be considered the thoracic muscle area rather than bulbar. Thoracic onset is pretty rare for ALS. Much more so than bulbar.

Your husband will find out some of his results of the swallow test right then. He may not get the technical report, but the speech pathologist should go over what he/she sees afterward. With the pulmonary function test, the technician that does it probably won't say anything to him, but he probably will meet with a doctor after, and would learn more then. He probably will be given some techniques then to help get more air in and out of his lungs. If his function levels are low enough, they will go ahead and get him set up for the BiPAP. Rest assured they're not going to let him leave if there is enough of a problem with his breathing where it would be dangerous to wait until the next appointment, wherever that will be.

BTW, I've not felt a tightness in my throat with swallowing, as you'd mentioned in your question. I do get this feeling of having a hair stuck in the back of it. In fact its been doing it all day long today - very annoying! I also have been having some laryngeal spasms, where there is a pulsating kind of tightness that lasts just a little while, then stops.

About my symptoms. ... First, I am not typical of anyone else that I've run across. I have a diagnosis of bulbar palsy, and a diagnosis of "probable" MND. At my last visit down at Hopkins, no one (me or them) was interested in doing more testing just to move me over into the "definite" category.

I have primarily (they feel) UMN involvement right now.

I started out with what I presumed to be jet lag. I was flying internationally at the time. I also started having this white ropey spit in my mouth and thought at first maybe I'd developed diabetes as my first child weighed in at 11 pounds and had always been warned this could be an indication I was at risk.

I went to the doctor and there was no indication of diabetes or any other metabolic disorder. My GP ran the test for Sjogren's and rheumatoid arthritis, because it appeared that my saliva issue was related to dry mouth, and I already had dry eye. This was in the late spring/early summer of 2006.

That summer I caught an awful upper respiratory infection, and after it was over I still had this sensation in my chest like there was phlegm in there rattling around, but nothing ever came up when I coughed. This was early September 2006. People started to notice my voice sounding hoarse and would ask me if I was getting sick or if they woke me....

September of 2006 I saw a pulmonary doctor, and was treated for asthma, for a while, He re-ran the ANA panels - they were all negative.


October, saw an ENT and tried therapy for reflux (Prilosec OTC) did not help my voice

January 2007 saw the first rheumatologist, he ran the ANA's again

March had a lip biopsy, it showed minimal focal inflammation of salivary gland, not diagnostic of Sjogrens.

April 2007 was started on Plaquenil and Predisone for Sjogren's anyway.

Mid summer I also began taking Methotrexate too.

Sept 2007, the first visit with my laryngologist who noted vocal cord atrophy

Oct 2007, EMG of vocal cords showed acute and chronic denervation/reinnervation of my vocal cord muscles.

November I had surgery on my vocal cords, the laryngologist injected filler in them, similar to what is used for cosmetic treatment of facial wrinkles. It fixed the bowing (there was a gap) but didn't help my voice really.

January I saw the rheumatologist that did the high dose Prednisone experiment

Now we're up to somewhere in February 2008. By now I'd been having facial cramps for a few weeks, like it would suddenly hurt in my cheeks like I'd been laughing a lot when I hadn't been. Sometimes when I'd drink or eat soft food, it would go up my nose a little, instead down my throat (soft palate problem) I was having trouble breathing at night, and getting severe headaches that would wake me in the early morning hours. My tongue had this stupid little quiver, and the edges of it had gotten all scalloped.

....My rheumtologist said, enough is enough, we're not helping you, lets send you to Hopkins.

So, down I went to Baltimore and saw the chief of rheumatology there. He too felt the prednisone experiment should have made a difference. He didn't like the look of my tongue, and felt it maybe wasn't mid-line when I stuck it out either. He wanted me to be seen by a neurologist at Hopkins in the neuromuscular division.

I saw her in April of 2008. She wanted more tests, but did bring up the possibility of MND. She said I had bulbar palsy, but that it wasn't a diagnosis, rather than a description of what was wrong with me. She said I had "possible" MND. For that visit in April, I had no weakness in my legs, and minimal weakness of the arms. She noted in that first exam weakness in my facial muscles, tongue, weak voice (of course) fasciculations in the tongue, brisk reflexes at the jaw, arms, and I don't remember where else. My legs were normal reflex. She said my speech was slow, and noted a slight lisp with some words. They did an EMG of my limbs while I was there, and it was normal.

I was sent back home, and was to have a modified swallow test, as I was having problems with choking. This is also when I got the aspiration pneumonia for the first time. In May of 2008 I had the swallow study. That swallow test revealed a lot. It showed I had "spillage", where fluids left my mouth without me swallowing, which explained why I'd start to aspirate without actually consciously swallowing first. It showed that when I did swallow, it wasn't complete, that only part goes down. It showed weakness of the soft palate, weakness of the larynx, (the function of swallowing itself) and slowing of the upper esophagus. The speech pathologists ~I actually had two working with me ~ also noted a bunch with my speech that I hadn't paid attention to. - but then they're trained to notice, I don't think (read: hope) its that obvious even now.

I had a "coned down" mri of my brain stem, it was normal (I'd already had a regular brain mri)

So, I went back to the neuro at Hopkins in July. She changed my diagnosis to "probable" MND, and said it was in my best interest to go on out on disability, (I was barely working anyway). She wanted me to start attending the multidiciplinary ALS clinic there at Hopkins.

By the end of July my legs were definitely feeling weak. In August I started having fasciculations in my legs. They started first in my feet, and have worked their way up.

That pretty much brings us up to the present. MY visit at the ALS clinc was interesting, but I wrote about it in a post that shouldn't be all that far down in the list on the forum, you should be able to find it.... I go for another modified swallow test tomorrow, and hope to have some answers about my increased problem with aspiration.

I can't believe this post is so long! I keep re-reading it trying to figure out where to shorten it at, and there really isn't anywhere....

I hope this helps answer some of your questions. Do everything you can to get him in to see the docs in Nashville. I do think that you will get some helpful feedback from the tests he is to have, and that you will not feel so at sea. It will give you an idea of how advanced (or not) his problems are. For example, if during the swallow study, they observe that he is aspirating, just by the act of swallowing, they will let you know. If they only see the weakness, and the propensity to choke or aspirate, then they'll make that clear to you. They will offer techniques right then that he can start using to make it safer for him to eat and drink.

take care, (hugs!)) :)
 
Ladies thank you so much this was a tremendous help. ;)

Take care

*Oh forgot to add to the info above, hubby is not a smoker*
 
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