Worried about Bulbar Onset symptoms

[Jasper1983]

Hello Everybody,

I came across this forum in a google search after i was trying to find some information regarding my symptoms.

Basically i have had many issues for past few years such as muscle aches, twitching, fatigue, on and off swallowing issues, pain, numbness, feeling certain parts of my body feel uncoordinated and slow, i have already been to doctors about this including neurologist who are investigations have told me they're not sure whats going on, the results don't show anything serious or worrisome such as EMG, NCV etc that were done in the past few years.

Last month my symptoms have got worse especially regarding my swallowing.

I feel tightness in my throat , my tongue feels clumsly and gets vibration type of feeling sometimes, also some pain around the base of tongue and behind my throat.

feel like my speech gets worse when talking to much like i feel i have to repeat certain words to get the right sound out or cant pronounce things correctly, my tongue feels tired as well and hurts on the sides and at the back.

My jaw feels fatigue, i chew too much sometimes to initiate a swallow and when i swallow i feel some particles of food still feel stuck in my throat, sometimes i get excess saliva, sometimes dry mouth.

Also some numbness in the roof of my mouth and a burning feeling under and on top of my tongue.

My voice gets strained and hoarse easily and also coughing sometimes.

In terms of eating i avoid hard foods now, lost weight, sometimes i feel my swallowing is ok but then suddenly it gets worse, to be honest feels like when i start off a meal its ok but as i go on i start to feel strained or tired and then the swallowing gets more slow and difficult, need to drink liquids to get food down.

I never choke or gag but i feel sometimes food or water might be going down the wrong way and i have to clear my throat.

I even get breathing problems at times but have been checked by a lung specialist and lung test came back good.

Already been doctors about all these issues, in the past month my Neuro told me im ok in terms of MND since already few years and no obvious progression , GI doctor said Acid reflux as usual and same medications, ENT said Throat seemed red and vocal cord irritated due to acid probably.

lastly seems like when i talk to much my hands and wrist start to feel numb and tingling, as well as my foot and parts of my face and head, i mentioned it to the Neuro, he didn't make much of it and said maybe its stress or something. I have done many test including Mri, Mra, emg, blood work, etc etc so im guessing the doctors are not taking me seriously anymore even if i am developing some issues.

I dont want to stay on this forum unless it sounds like something is going on, i really need your advice about what you think it is or i have to worry about a MND etc ?

Awaiting your advice, thanks and bless all of you

 

[lgelb]

Hi Jasper,


As you say, you have had issues for several years, with normal EMGs. Those two facts essentially rule out all but the slowest-moving, upper motor neuron disease (which is very rare), and certainly do not point to ALS.

Add to that your pre-existing reflux, and the conclusion is that your most recent throat symptoms are probably GI-related. That in turn suggests a second opinion at a different hospital or clinic about your GERD and what medications should be used, and tests done. If you have not been tested for H. pylori, this would be a good time.

Also, since any GI symptoms, and certainly throat problems, get worse when you are tired and stressed, those are always things to work on. Diet can also help a lot; you may want to consult with a dietician wherever you get your GERD care. Since GERD can lead to erosive esophagitis, which is more serious, it is certainly worth a second opinion given your symptoms.

But you're in the wrong place here, and that's great news.

Best,
Laurie

 

[Jasper1983]

Dear Laurie,

Thanks for the super quick reply, must be quite late in your side of the world, out here in Oman its still mid day.

Thanks also for the information, honestly i have been to many doctors, my government even sent me Thailand as the hospitals are better there to get second opinion and doctors haven't been able to help me much for my GERD, have tried many PPI.

To be honest they are very confused as well, some even recommended me to go see psychologist even though i didn't complain much or get to much anxiety problems.

Even today my head, throat muscles feel very tight, especially on my left side and having lunch was a challenge even with a Tuna sandwich which was soft and easy to eat, i have some pressure on the left side of my neck as well, at times i feel like my tongue, throat and chest is twitching or getting spasms.

Also my twitching is bad now days, i even get in my throat and chest and feel inside my throat and neck muscles, when i asked doctor they said it can be anywhere but usually on body for face or throat etc its possible but not common.

For the Slow Moving UPM disease you mentioned which one is that, i already saw 3-4 neuro in my county as well as Thailand and none of them mention about this.

but for my EMG i did on body only since that time mostly complain about body, they didn't want to do neck or chin, i had EMG 3 time, once in Oman in 2015 and twice in Thailand 2016 all show ok, only doctor mention about Ulnear nerve and he said maybe slight issue in neck muscle and said if it get worse can do MRI again in future but he not mention about it on report.

Last time at follow up with neuro i ask him about Bulbar and if it show on EMG or not he said its possible not show in 2015 for first time but it would show on 2016 1st or 2nd one for sure because it will spreading by then, it is true ? he even look at my tongue and make me push my cheeks out and said tongue look normal ( No atrophy or can not see moving or twitching) and also strength good since can push out and retain with pressure and push with finger.


Anyway if you think im in wrong place then thats very good news for me, however if anyone else as well as yourself has any more advice or answer kindly let me know before closing thread.

Thank you and God Bless you

 

[Clearwater AL]

igelb (Laurie) is a very knowledgeable member. going onto 10 years as a member of this Forum.

As you wrote...

"Anyway if you think I'm in wrong place then that's very good news for me."

Go with it...

 

[Atsugi]

Not ALS. At all. No way.

Ask your general medical doctor if you should see a psychiatrist.

 

[Jasper1983]

Thanks very much to all of you for taking time out to write back to me.

It’s very reassuring to hear all your answers and opinions.

I definitely have some issues going on with my body such as GERD etc which might be having some effect on my throat and tongue, also I think I might have BFS and Fibro as well.

No doubt my symptoms such as my tongue, mouth and throat are bothering me along with many other things, I even feel like my tongue is not managinging food well inside my mouth and some food sticks in my mouth or throat but I understand that these things could be normal and I’m focusing to much on them and by being here and overthinking it I’m fueling my anxiety as well as bothering you for answers.

That being said I agree with all of you that ALS is not in the picture and I need to move on from this point, I need to address and fix the obvious problems including maybe seeing a psychiatrist if they recommend one for me and improving my lifestyle and GERD.

Thank you again for all the answers , truly appreciate what all of you are doing here for people like me , kindly please close this thread, hopefully I will never need to come
Bother you nice people on here again.

God bless all of you