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rose

Extremely helpful member
Joined
Mar 29, 2008
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2,925
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DX MND
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7/2008
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US
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Maryland
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Anytown
I hope this is not a question that has been asked and answered repeatedly.... Some of you may remember that I was going down to Johns Hopkins for evaluation. I still do not have an official diagnosis, but, the neurologist said that I appear to have bulbar palsy, and the report she sent to me, as well as to my local doctors, had Progressive Bulbar Palsy in the "diagnosis" field of the report. I was reading through what she wrote, and there were things that she found that I was not aware of. One of those is the "brisk" reflex ~ 3 plus ~ (in my jaw and lower extremities) I would have thought, before all of this started, that "brisk" would equal "good" but I guess not (?) She also said my tongue had tremor and fasciculations, (I didn't realize I had the fasciculations, had convinced myself it was just tremor). There was much more in the report, i.e. tongue atrophy, weakness, blah blah (sigh).... I also had the modified barium swallow performed a couple of weeks ago now, and it turned up more problems than I realized I had.

.... Its such a long road, as all that are reading this already know, and now, even though the news is not good, in a way it is reassuring just to be dealing with specialists that understand what to look for, and what they are seeing. It sounds like I have one more test to complete, a "coned down" mri of my brain stem. This is not yet scheduled, but hopefully will be by early next week...

I remember at least one person here on the forum was interested to know if I liked doctor Sumner, and the answer is a very emphatic yes!

One more thing, Has anyone else had trouble banging their elbows? I keep hitting my elbow (mostly the right one) into things, the door jamb when I walk through, even opening the car door sometimes. At any other time in my life, I'd just chalk it up to being clumsy or whatever, but now I wonder if its connected. My right hand does get the vibrations in it, occasionally sometimes my left too, but not so much, only if I'm super stressed..

Anyway, if anyone understands the importance of brisk reflexes, I'd really appreciate the response. take care, Diane
 
diane,

I bang my elbows alot also, And I am always wondering did I always bang them and didn't realize it.
What is a "coned down" mri of the brain stem?
 
diane,

I bang my elbows alot also, And I am always wondering did I always bang them and didn't realize it.
What is a "coned down" mri of the brain stem?

See.... the elbow thing ~ everyone bangs their elbow occasionally, and then afterwards are more aware if we bump it again because it still hurts from the previous time; but I came to realize that I was doing it many times a day. When I went down to see Dr Sumner at Johns Hopkins I did mention it to her, but we did not discuss it at all. I've come to think there is a connection, especially after I managed to bang it when opening the car door, just not sure what I'm doing to make it occur. Is it an exaggerated reflex? or an involuntary movement? .... just don't know. And, personally, its never been like Grace should be my middle name, so getting more klutzy is the last thing I want!

The coned down mri is to have a more focused look at my brain stem, as that is where the cranial nerves that are affected originate. I was told that a regular mri is taken from the top of the skull, and is more useful for ruling out or detecting diseases such as MS. I've already had that type of mri and it was unremarkable.

I had an interesting conversation with my laryngologist today concerning the test results of the modified swallow test. I've been insisting that when I choke or breath in water or saliva, it seems it happens before I actually swallow. This happens most often when I'm in bed at night. The test showed (among other things) that I have some "slippage" that liquids in my mouth will start to go into my esophagus without me swallowing. Although this obviously is not a good thing, in a way it was reassuring just because when I'd tell people it was happening they'd give me this "look" .... for anyone that has any issues with swallowing or chewing, even talking, having this modified barium swallow test performed would be very beneficial. It is completely different than a standard barium swallow test. It is performed with a speech therapist along with radiologist. For my appointment I actually had two speech therapists doing it, one of which was also a doctor. Even in NYC, there was not an imaging facility that offers this, I had to go to the Eye and Ear Infirmary (major hospital)

Thanks Al, for responding to the first part of my question. I found the link you posted for me to be helpful.

take care, :smile:
 
Hi Rose

Hi Rose, i have not banged my elbow but it reminds me of something else. When i swing my bathroom door open i would just brush the top of my foot which in turn would hurt my big toe immensly. My left foot is really flat now and the space between the door and floor is just enough that it can swing over my foot but still hits my toe. It is funny because i do not even think about my foot being there and i go to open the door then it's like Aughhhhhhhh, my toe..... It catches the top of the nail.... Anyways thought i would share my funny story.
 
Hi Rose, i have not banged my elbow but it reminds me of something else. When i swing my bathroom door open i would just brush the top of my foot which in turn would hurt my big toe immensly. My left foot is really flat now and the space between the door and floor is just enough that it can swing over my foot but still hits my toe. It is funny because i do not even think about my foot being there and i go to open the door then it's like Aughhhhhhhh, my toe..... It catches the top of the nail.... Anyways thought i would share my funny story.

ouch! well, this morning when I banged my elbow, I thought of you, and your bathroom door connection, and it made me smile, I guess its true that misery loves company. I think I'd rather my elbows than my toenail though. Perhaps, now that you've written about it, it will be there in your subconscious ready to warn you the next time :)
 
Yes Rose, when i think about it, it has been a long while since i did it........ Its not that bad it just pushes the top of the nail real hard. No nail tears. Just think, while you are banging your elbow someonelse is banging their foot, and so forth...... It is pretty funny, all we can do is laugh......


ps.... I do not have the choking episodes but i thought i would share this. For the longest time, i drink liquids by taking a sip, holding it, then swallowing.... Like two swallows for one sip. If i try to to just guzzle or drink normal it goes straight into my windpipe. I see commercials where people down their drink, or watch my kids throw back their gatorade... I make a conscious effort to sip and swallow.... I hope you are okay and that the throat specialist helps you............ Sam
 
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