Possible als or fibromyalgia opinions please?

Re: bulbar issues? more info on it please

Hello not me i will look this up...
actually no my neuro's never cleard me of anything i had to move to get a referral to a new one i was going to the ALS clinic but bc of finical strains went to this one,, the only thing i have been clearsd OF IS MS. and the neruo is the one who said als and i came home to get on a fourm and ask questions, i thought i was in the clear of no ms, but after symtems kept prevailing and balance came into the game, i started twitching in nov and never went to the dr for that or the back spasms the weakness is what sent me to the er and doctors, i never put 2 and 2 together, soo unfourtunly i have never been cleard of als, and testing takes soooo long to do and scheduale.

I just thought since i had these odd new issues i would ask, if it had anything or sounded like Bulbar or not

Re: bulbar issues? more info on it please

The answer to your question if your "lump in the throat" sounds like Bulbar onset is No! As i've said many times before, if your speech is not slurred and you have no trouble swallowing then it's not bulbar onset ALS.

Re: bulbar issues? more info on it please

BarryG said:

The answer to your question if your "lump in the throat" sounds like Bulbar onset is No! As i've said many times before, if your speech is not slurred and you have no trouble swallowing then it's not bulbar onset ALS.

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BarryG , thank you well its just sometimes things are hard to put into words, and i do have slurred speach but its more along the lines like i go to say something my brain knows how to say it correct ,but it comes out so wrong my friends laugh at me, iam assuming thats not what you mean?

the swalloing this is new past few days, it just feels like when i swallow somethings is there and my saliva wont push it down and ofcourse you have an automatic gag reflex, but when i drink it goes down, yes i can actually swallow just the feeling and how the food gets stuck , oh well maybe just an allergy iam develping getting older.

Re: bulbar issues? more info on it please

BarryG said:

The answer to your question if your "lump in the throat" sounds like Bulbar onset is No! As i've said many times before, if your speech is not slurred and you have no trouble swallowing then it's not bulbar onset ALS.

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BarryG , thank you well its just sometimes things are hard to put into words, and i do have slurred speach but its more along the lines like i go to say something my brain knows how to say it correct ,but it comes out so wrong my friends laugh at me, iam assuming thats not what you mean?

the swalloing this is new past few days, it just feels like when i swallow somethings is there and my saliva wont push it down and ofcourse you have an automatic gag reflex, but when i drink it goes down, yes i can actually swallow just the feeling and how the food gets stuck , oh well maybe just an allergy iam develping getting older.
even yawning i can feel my thorat very odd....

Re: bulbar issues? more info on it please

Sounds like you need a workup with an ENT

Re: bulbar issues? more info on it please

yes maybe i do also need to go to an ENT, all this is so overwheming right when iam trying just to get a grip on my other issues, i did try to eat again tonight and now iam paying oh so dearly i cant stop gagging and ive look so many times and nothing is there,, only laying down seems to help w my chin pulld in. I think if it keeps persisting i was just have to go to ER, i dont understand i feel like iam taking big gulps to swallow, i just have no idea what the heck else should be happeing now throat issues?... thanks

Re: bulbar issues? more info on it please

Anxiety attack.

Re: bulbar issues? more info on it please

shew i wish it was an anxiety attack if it was iam sure anxiety meds would help, i wish soo badly someone would actually take me serious, this is serious and i just had a question, its NOT an anxiety attack, its a realy PHYSICAL issue, thats going on in my throat, its been happening straight now for the past few days, ive been ignoring it thinking that it will surely go away, ive been going a nasel spray also per doctors orders thinking ,it will help since he sees absloutly nothing or even a virus,

It is a constatnt feeling like when i swallow saliva and once i eat food, right after or during its litterly like food will get stuck and it makes me gag and i drink water and nothing takes it away, i have never had this, and it gets better A TAD after not eating, but i guessing salvia isnt as hard to swallow.

Also when i lay down and put my chin in its not as noticeable, i was gagging badly earlier after eating to where i was throwing up and only thing helpd ws laying down and swolling with my chin in, its still there but iam not gagging.

so iam assuming that my issues are not bulbar at all?.. thats why i askd because from what my definition was and what i was thinking was bulbar and why people choke who have bulabr ws bc of the same thing i was describing happeing to me, i guess its completly differnt and something not even associated with a MND if i would have it?... thanks

Re: bulbar issues? more info on it please

i was doing a little research on this only thing i can come up with that matching what iam talking about its something called Dysphagia.

not sure what that has but stating that you can also have a sore throat involed, and that it can be caused by a number of things usualyy dont happen but in elderly unless you have a underlying condition and it can even be Neurological, or Muscular stating that the muscle actauly can spam or not relax enogh for food or saliva to be go down corecctely hence the feeling. Not sure what all this would mean but i guess it could have something to do with other areas ,but again maybe completly differnt

Re: bulbar issues? more info on it please

went to er bc it got bad .. nothing to do dr statd it was nerve damage, and could be a slew of things , including neurological

Re: bulbar issues? more info on it please

Dysphagia just means difficulty swallowing. It is a symptom not diagnosis. I'm not sure what your symptoms are exactly. Have you been checked for GERD? There is a rar disease called APLS have you looked into that? You could have difficulty with swallowing for several reasons. You are too young for ALS!

Re: bulbar issues? more info on it please

Just read that dr said nerve damage. What did he use to diagnosed this MRI or EMG? Did they do MR of your cervical spine or larnyx area? He can't say nerve damage without a diagnosed test. Are you on any steriods? Steriods can help but they can also cause steriod myopathy

Re: bulbar issues? more info on it please

sya15 said:

Just read that dr said nerve damage. What did he use to ALS diagnosis this MRI or EMG? Did they do MR of your cervical spine or larnyx area? He can't say nerve damage without a ALS diagnosis test. Are you on any ]

welll he did some sorta test took test for some virual and lookd in my throat ask questons then he said was going into detail how nerve were and reactd to the brain and spine yata yate, and said oh its nerve damage.

I didnt think that would have anything to do with als he said to go to a neuro (which i didnt tell him the other things and i go wed) and also be workd up with and ent , so here iam just waiting my voice is very very hoarse today and yesterday the swolloing is not as bad as it was when i went to the dr for it.

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Re: bulbar issues? more info on it please

"yesterday the swallowing is not as bad as it was when I went to the dr. for it."

Once again, ALS does not get better and worse or wax and wane. It just goes downhill.

Two neuros that saw you would have cleared you from more than just MS. MS is diagnosed clincally and by a MRI of the brain. So you have been cleared. Neuro's don't tell you the list of diseases they will clear you from before they begin because it just leads to undue worry and anxiety. I am sure these two neuros would have pushed for an ALS clinic exam or push you on to a more specialized neurologist if they expected something was up. They probably cleared it in their head and didn't feel like you needed to hear it!

And finally, it is very hard to help you munecagirl when you have all the different threads and you never give us the full story to begin with. Whenever a member states that you 'have to have this' to be considered with ALS. Suddendly it becomes one of your prominent problems! Ex. earlier in the thread when you said you had swallowing problems like something stuck. A member mentioned that you didn't have slurring problems so don't worry...and then you replied...."oh I do" I think one- this would be a major concern over feeling like a lump is in your throat...and two it sounded better and fit better to say that you do have it.

I highly suggest you 1. see an ENT for your throat issues if they persist.
2. See a psychologist for your anxiety and possible conversion disorder.
3. If you ever go see a dr. again say to them 'I fear I have ALS' and see what they say....your answer to your problems
will come from them....Good luck to you.

Re: bulbar issues? more info on it please

cleard?.. i have never been clearnd of anything ,but ms, and ive only seen one neuro my whole life but several drs recectly and once reason is bc my husband travels a lot and i have been moving since last neuro visits. and i do have slurring but, i never knew that was any of concern its not BAD continueing slurr just something someone would laugh about maybe not putting words in i think but come out wrong and all muffled.

that is why i had said yes i have slurring after someone mentiond it. When all this startd i never even knew twitching was something to be concenrd about untill the dr askd me?.. its like putting puzzle pieces together .. or for me it is atleast