Bulbar symptoms

[planningguy]

Quick word on dental dams. When he did my root canal, my endodontist said that they are standard office dental equipment, but that many dentists don't use them because they are in a hurry or patients find them a little uncomfortable. He is a young guy, and very conscientious, so he went on to say more patients should demand that they be used. I know our family dentist has used them on our children before.

Short answer: If they work for you, your dentist should have dams in their office as part of their standard equipment.

 

[olly]

rose

thankyou so much for your reply, i thought i was going mad lol as i seemed to be the only one with this.when i swollow i too get bits of food left at the back and this drives me crazy its as if not enough force is being generated to push it all down.
i think the soft palate may be too low down and the ?(the thing that dangles down lol) is always curled up to the right.
i also feel when my mouth is closed my tongue feels like it is more flaccid like it just spreads out and fills my mouth and feels big and awkward. it feels more squiggy.
if you stick your tongue out is it normal to see movement in the tongue(not the tongue moving about but in the tongue itself)as i have this but not sure if its fassiculations or normal movement,i can not feel it just tingling sometimes when my mouth is closed.
i will definatly ask about the barium test you mentioned,my pt is going to ask the speech therapist to come and see me so i dont know how long it will be then waiting to have tests so it may be a while before i know what is going on.
in the meantime i am just trying to stay as calm and rational about this as i can.
i have come to manage the body symptoms and all this starts so i have been a bit freaked out by it all.
thankyou rose and godbless
caroline:-D

my previous link if you click on it it is the third article down called intergrated neuroscience. you want to start at chapter 12 entitled cranial nerves.
there is a good diagram of mouth/throat nerves and muscles.

 

[rose]

for oily

Yes, my tongue feels like that too, even though its smaller in my mouth, it feels like its taking up more space underneath, and its mushy feeling under there. Not to the touch ~ well actually it is, but I meant the sensation of it in my mouth. My tongue has the little jiggles under the surface when I lift the tip up or move it to either side, the doctors are calling it fasciculations, so that is a specific term and within the medical community I was told it is not interchangeable with tremor, that it is a different thing. I never could stick my tongue out very far, but recently have lost the ability to do so much at all, it doesn't make it past the border of my lip, and it goes to the right. I can make it go straight, but it feels like its going out further if I let it move over to the side, and to bring it mid-line it feel to me like I'm moving it to the side, weird right? I hope your pt is able to get you moving towards some new diagnostics. Thanks for the link, I'm going to look at it now, take care and have a good weekend!

 

[Shatzie]

I, too, have the "pop rocks" feeling on and in my tongue.

 

[planningguy]

That you for the continuing information on bulbar symptoms. I was at a birthday party today and eating wasn't really coming together. I did OK with oatmeal earlier, but party food and I am not agreeing right now. Shame, the cake looked good.

I am curious about fasciculations, are they a later or earlier sign. As I mentioned I get a sore jaw sometimes when I chew, and sometimes I feel sore in my cheek and jaw muscles, but I have yet to notice fasciculations (except my poor nose/nostrils ;P). My tongue feels more likes its burning, but I haven't noticed any fasciculations as they are being described here (like the tongue is being pricked by a pin, or waves along the edges).

One other thing I wanted to ask. I have what feels like a sore throat. Trying to drink water actually makes it feel worse (like its tightening). Does this sound familiar to anyone?

Robert

 

[patricia1]

Yes when I drink water I feel like my throat is tightning and my voice changes after drinking.

PAT 1

 

[olly]

wierd feeling

i thought i would mention this as this morning it is driving me mad.
does anyone get a feeling like theres a hair or cobweb on there soft palate?
it feels worse when i drink or breathe with my mouth open and i keep wanting to brush the invisable feeling away with my tonue.
take care
caroline:-D

 

[planningguy]

All over the board tonight, but its been a rough day... Quick question for those following this thread. How common is it for bulbar and limb onset syptoms to to emerge simultaneously and aggressively?

While I work my way through the diagnosis process to figure out what ails me, ironically one of the things that keeps my mind on other possiblities is the fact that the symptoms seem to be exploding all over the body, and not moving slowly from one spot to another. The swallowing, speaking, and blasted dry cough, would be bulbar symptoms, while this constant stiffness and twitching in my bicep and calves would be more limb onset. It seems like any muscle, no matter where in my body, gets sore when I use it while some areas (bicep, legs, neck and jaw) don't snap back and continue with the twiching and stiffness. Does any of this make sense?

I might be raging into the web, but its our 10th anniversary week, and I made it a personal goal not to bug the wife about anything health related for a while.

Robert

 

[rose]

All over the board tonight, but its been a rough day... Quick question for those following this thread. How common is it for bulbar and limb onset syptoms to to emerge simultaneously and aggressively?

While I work my way through the diagnosis process to figure out what ails me, ironically one of the things that keeps my mind on other possiblities is the fact that the symptoms seem to be exploding all over the body, and not moving slowly from one spot to another. The swallowing, speaking, and blasted dry cough, would be bulbar symptoms, while this constant stiffness and twitching in my bicep and calves would be more limb onset. It seems like any muscle, no matter where in my body, gets sore when I use it while some areas (bicep, legs, neck and jaw) don't snap back and continue with the twiching and stiffness. Does any of this make sense?

I might be raging into the web, but its our 10th anniversary week, and I made it a personal goal not to bug the wife about anything health related for a while.

Robert

Hi Robert, yes, from everything I've read (and I'm not in the least an expert) it is not typical of any MND for it to hit so many places at once and at such a rapid rate. Honestly, after my road to diagnosis, I can say that exploring this stemming from an autoimmune/inflammatory cause should have a priority.

Just a suggestion here (and nothing like you actually taking it, and going to your doctor and telling him some woman on the internet says you should try this, LOL) but, this was what was done for me....

When I first became sick, my doctors tried to make a case that an autoimmune disease had infiltrated my nervous system. Over the span of a year's time I eventually was on a combined total of two immunosuppressants, in addition to varying amounts of prednisone (which is also an immunosuppressant technically). Prednisone is an anti-inflammatory, as I'm sure you know.

Nothing helped me, I continued to get worse. Eventually I was referred to a New York rheumatologist that is a venerated legend in his specialty. If I tell another doctor I saw him, they not only instantly recognize his name, but ask if it was "Harry" or the son (don't remember the son's name). He thought the best route was to put me on a very high dose of prednisone for two weeks. He said that if anything improved, that it would demonstrate that my problems were inflammatory and could be treated. It did not count if I "felt" better, because anyone will feel better initially on prednisone, even if theyr'e the healthiest person on the planet.

Long story shortened, it did not help me at all. I then was sent down to Johns Hopkins and saw the head of rheumatology. He concurred that that amount of prednisone should have made a difference, and that there was no clinical evidence to support an autoimmune cause for me, and consequently, I was sent to their neuromuscular division.

My point for you is that any doctor can prescribe prednisone. Its a widely used drug, that of course has the potential for some bad side effects. But, if you could cut to the chase, and see if it had an effect on your symptoms, it might shorten your journey toward diagnosis and effective treatment. Time could very well be of the essence if you do have a treatable condition and most likely you do.

good luck to you, and enjoy your weekend