So...

[Landau]

If I have Bulbar onset there's no point in going to Neuro as tests won't pick it up anyway? it's my difficulty swallowing that is most worrying me...i have to wait 'til i can't swallow at all to get some answers?

 

[rose]

I have bulbar onset, and the EMG was diagnostic for it. Progressive Bulbar Palsy absolutely can be diagnosed by a neurologist. But, the best place to start for swallowing problems is an ear nose and throat doc (ENT) or allergist, rather than a neurologist. The next stop should be a rheumatologist.

You will get answers a lot faster, minus the fears and added symptoms that tend to arise "by association" if you go to a doctor rather than trying to find what diseases fit your symptoms over the internet.

good luck to you

 

[Landau]

Hi, Rose.

Thanks for the reply.

Here's the symptoms I'm experiencing that lead me to be curious about Bulbar onset... along with the twitching, cramping, and general muscle weakness, I'm experiencing the following:
1) thick, excess saliva, which seems to be stuck or slowly dripping down my throat at all times (sometimes so bad I have to cough to clear my throat about every 2 mins, for up to 1-2 hours at a time)
2) difficulty swallowing: it's like it takes me an extra 10-15 seconds to get anything down, not to mention the constant lumpy feeling whenever anything does go down - liquids are noticeably a problem too. My throat muscles make a "clack" sound when I finally get anything down.
3) drooling on my pillow, my bedsheets, myself during sleep. if not a complete drool, then at the very least my lips are always wet in the morning (can be passed off as "normal", yet how come I never experienced this consistent drooling in my life before?)
4) choking. I've choked on my own saliva a few times in the past couple of months.

also, contrary to what I stated before about the symptons occuring in the last 6 months, a bit of brain fog was alleviated and now I most definitely, definitely remember these throat problems (to a much more minor degree) occuring as far back as last Feb-March (I remember thinking I could choke in my sleep - I passed it off as something related to a nose problem, and just some mucus draining down into throat... )

so, along with the twitches, spasms, cramps, and weakness. does this not sound like something to be worried about?
I guess my being in my early-mid twenties comes to my advantage. But I've had a lot of head injuries (especially in the back of the head), and possibly exposed to toxins (I've thought about it), it's not looking good. I've been told my symptoms don't exactly point to ALS, but I'm really considering this now. Neuro-time. Frightening. Especially since all of this is happening over a 6 month time. Makes me wonder - if I do have ALS, is this an indication that mine will be a quick progression?
The stress & anxiety is maddening.
I thought that the clinic-doc's (again, NOT neuro... just a doc at my local clinic) analysis of me was a great thing (reflexes intact, muscle strength intact, coordination intact etc) - only to find out the dreaded Bulbar can only be definitively diagnosed after it has manifested into an all-out catastrophe. YIPPY! Good to be young!

 

[rose]

Landau,

What you're describing does not sound anything even remotely like what has happened with me.

And, like others on here, I'm not a doctor, (but I've been to many LOL) so, my advise stands, it sounds like you should see an ENT or an allergist. There is not even any reason at this point to connect what you have going on with swallowing to the muscle problems you're experiencing elsewhere.

Given that you don't have symptoms that would point toward ALS, your age on top of that, and that ALS is uncommon at any age, it makes sense to see a doctor who specializes in the field where you physically have the trouble at, and go in to your appointment describing what is bothering you with the swallowing, drooling on pillow at night, ~ at least it wasn't a girlfriend or wife's shoulder ;-)..... not lead in with fears of bulbar (or any form) of ALS.

I know I just wrote this recently on this forum, and if you search down through the posts you should see it. But, I 'll say it again. Swallowing difficulties are not considered to point to bulbar onset of ALS, doctors actually look at onset of swallowing issues before speech problems as a way to point away from ALS and for another cause.

I still think you would benefit from a separate evaluation about your muscle cramps and twitching, and your primary care doctor is a good place to start (ask for a referral to what ever specialty he/she feels could get to the bottom of it).

Good luck to you, and come back and let us know what you found out.

 

[crystalkk]

I would definately see a dr. like Rose suggested. But please don't jump to the conclusion that you have ALS.
There are so may things that can cause these problems that are treatable or it might not be anything at all.

 

[Landau]

Rose,

You are a very kind person to take the time to answer my questions. Very thoughtful of you.
The only other thing that worries me is my tongue. It looks depleted (is that the word?) and scaly. When I stick it out it twitches in different areas, and CANNOT and will not hold still. It looks like it's almost on Vibrate. I notice I slur speech, but no one else seems to notice right now. So like most symptoms with ALS, maybe this is something creeping up - and my speech difficulties will be noticed soon enough?

thanks.

 

[Landau]

and I know this'll soon get redundant, but the afformentioned question is my last question before I go see some specialists (going to start making appointments today!)

 

[rose]

Hi Landau,

If you see an ENT doc (ask for the doctor in the practice that specializes in voice/throat if possible) that doctor will be trained to notice the same things that you question. In my own personal experience, a doctor will actually notice subtleties that I hadn't yet (instead of the other way around). Questions about how your tongue is behaving, etc, are areas that this type of specialist is going to zoom right in on (just think about how many tongues they see every day). It isn't like an ENT will not have the training to know when nerves are involved. It was this type of specialist that first uttered the words "cranial nerves" to me. All of these areas are intrinsically related, and as ENT docs are also surgeons, they know how its all connected. Please make those appointments and either get some peace of mind, or a direction to be looking as for what it is that's causing your trouble. good luck! :smile:

 

[brendapals]

hello Landau,
Yes, please make dr's appt today, like everyone else has said, doesn't sound like ALS, and hopefully getting to the right dr will help a lot.
take good care,
brenda

 

[Landau]

Thanks, Guys.
Honestly after reading Rose's posts, it's made me feel more confident. But it's this pesky tongue staring right back at me. I've had my friends show me their tongues, NOTHING like mine. Mine looks bitten out of at the sides, less meaty, and girates in different areas. Now if that ain't somethin' to do with the MN's, I don't know what is!

I guess I just can't accept that I don't have ALS. With all the toxins thru drugs and alcohol I've injested, and as I've read on the net the incidence rate between traumatic head injury and ALS having somewhat of a connection, I can't help to think that these factors would contribute to it at a young age.

 

[crystalkk]

landau,

Please stop looking at your tonque, and stop reading on the internet..... You haven't even been to a dr and you are self diagnosed yourself with
ALS. Do you think you are the only one in the world that did drugs and injested alcohol?
Have you had a Mri of your brain recently beings you had a traumatic head injury?

 

[Landau]

went for an MRI last Feb. Came back fine.

so... twitches, cramps, weakness, swallowing difficulty, deformed tongue that wriggles, twitches etc...
does NOT look like it point towards ALS?

well, that makes me feel a hell of a lot better. And I most definitely take your opinions seriously, as you guys have obviously already been thru so much.

 

[crystalkk]

Landau,

I am not a dr. The dr is going to look at your tongue when it is laying in your mouth to see if it is moving. Alot of peoples' tongues
quiver when they stick them out and alot of people have teeth marks on there tongues. The Ent will be able to look at your tongue alot deeper down then you and see if it is twitching. Like Rose said they see alot of tongues. How much did you look at your tongue before this?
Do you really know if it looks any different than before.....

 

[rose]

If teeth marks on the tongue, or a twitching tongue (or twitching anything) could be the definitive symptom for ALS, ALS would be an easy quick diagnosis.

My best advise is to go to the doctor, don't try to steer the doctor in the direction of any sort of ALS, stay away from trying to research symptoms on your own (its a guarantee to develop new ones the more you read), and stop looking at your tongue! If you have something as serious as this, how are you ever going to be able to deal with it, if you can let just the fear of it do this to your psyche! The mind is what matters, get yours in the right place, and no matter what is, or isn't wrong, it won't defeat who you are.

And, (this is coming from someone that came of age in the era of sex drugs and rock and roll) forget about past drinking and other life adventures, if these were the cause of ALS, then at least half the population over 45 would "have" it. really.... I think I'm going to find my thermal Peace Symbol shirt now.... and put on a Grateful Dead CD ~ actually I don't have any Dead... maybe the Stones... Steppenwolf .... Beetles... )

Trust that the doctors that you see are going to know more than you can learn on the internet. and get back with us with how you are,.

 

[Landau]

well I'm gonna post a picture of my tongue after I get back from doing some stuff. See if you guys see anything out of the ordinary, or anything that you can identify with, or have seen as related to MND, or if it's just all in my head... I know I'll get an honest answer, and that's what I'm looking for. If you guys say it's nothing out of the ordinary, I'll take that seriously, if you say that maybe it's something to be worried about or something to look into at least, I'll take that even more seriously...

thanks!