Question about bulbar onset

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Dan

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Hello everyone,

First of all, big thank you for your kindness and enormous amount of time you spend here to help people like me, which you by any means don't have to do.

I cannot write to my previous topic (Question about symptoms and EMG), please connect this topics if possible.

I read the rules and stickies, and I will explain why I wrote again in the end of the post.

The main concerning symptoms are:

- stiffness in neck, throat, below the chin, under the tongue and below the jawbones;

- stiffness on jaw sides when chewing;

- twitching in neck, jaw, under the jaw, lips, tongue, occasional tongue spasm/stifness;

- occasional nasal, hoarse voice, voice became more silent;

- occasional rare nasal regurgitation;

- swallowing issues (more difficult swallowing, feeling that food (especially soft and solid) is stuck somewhere behind the tongue, pain during/after swallowing, need to swallow twice sometimes) but swallowing itself seem to be fine with food and liquids going down OK, no frequent choking, just occasional coughing after eating and very rare during eating;

- not really slurred speach so far, but a lot of speech defects (e.g. mixing sounds in words or "swallowing" sounds);

- feeling ball of mucus somewhere above the tongue, somewhere at soft palate, occasional pain/discomfort/remaining of food there on swallowing;

- last but disturbing addition to all above (from August 21) is hypersalivation. I do not drool during a normal day, just forced to frequently swallow for now, it happens all day. Sometimes when doing sports or speaking saliva may come out from the mouth, but usually frequent swallowing helps. When I am eating, saliva, food and/or liquids can fall/spill out as well, but usually don't feel excessive saliva during eating otherwise. Sometimes have feelings od drooling from corners of my lips, but every time I checked it was dry. Saliva build up from moderately quick to very quick, under and from sides of the tongue; sometimes has a lot of air bubbles in it, becoming frothy. Do not have any drooling at night, everything is OK when I am sleeping or laying in bed, but during the day still happens even if I have dry mouth.

All of these besides mentioned swallowing issues appeared after EMG (result in previous post) which was done on August 1st.

Since my last post, I have been to another neurologist and had neurological exam which was OK (done on 18th of August). Was ordered to do some blood work (CRP and CK, done on August 21), both were OK as well, plus MRI of head and neck (not done yet). During the visit doc said that she doesn't see neuro issues. Salivation issues developed little after this neuro visit. Went to ENT, who said that except some GERD symptoms (ordered gastroskopy) he don't see anything from his department and said that saliva issues are neurological, which made me extremely worried again. Except of this, I have twitching in muscles around the body, muscle pains, muscle stiffness and fast muscle fatigue from doing anything.

I have positively diagnosed with latent tetany, positive result in EMG ishemic test. Taking magnesium and D3 daily.

So with all this, I'd like to ask the following:
1. EMG was done, as well in tongue muscle from one side, measured under the chin. Taking it was a month ago, and since then all new things have developed, would have it shown something if all what I described is connected to ALS?
2. With OK EMG, would more recent neuro examination have showed something wrong if my symptoms would be connected to ALS?

I am sorry to create another thread and burden you with my concerns again. I posted again just because GP and ENT suggested neurological issues, while neurologist said I seem to be OK so I am very confused now if I should seek for another neuro visit or new tests. Regardless if you reply or not, this will be my last post on this forum. Immensely appreciate your time and wishing all the best.
 
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lgelb

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Yes, and yes, as we also said yes in your last thread. The damage that causes loss of the ability to move normally is well underway by the time a PALS has symptoms.

GPs and ENTs are trained to suggest a neurologist if there is any possibility of neurological disease. It does not mean they think you have one. Clearly the neuro does not. However, "latent tetany" can relate to blood calcium levels so I trust those have been checked. It can take time to correct any electrolyte/mineral imbalance. It is also good that you are being tested for GERD. In addition, sometimes your body does not use nutrition well. Whenever your body is stressed, restful sleep is very important. If you're not getting it, that's something to discuss with your primary physician.

Best,
Laurie
 
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affected

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Last time you wrote "After re-reading everything I wrote I realise how ridiculous it all sounds. I am sincerely sorry for taking your time."
Please go get help from your doctor, but realise that the terminally ill can't do anything to help you.
 
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Clearwater AL

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Dan, at least this time you kept it shorter than your first Thread
of… 1,687 words, 13 paragraphs and 138 lines down to 705 words,
81 lines and 25 paragraphs. (Thanks for breaking it up into more
paragraphs.) :)

But, nothing has changed... concerning any further help we could
be to you. (No smiley on this one.)
 
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Dan

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Big thank you @lgelb, @ShiftKicker, @affected and @Clearwater AL . Just to explain myself, I was not looking for any kind of reassurance, and did not intend to offend anyone here by any means. And yet, I was ridiculous again and upset people around. Thank you for posting replies here and spending some of your so precious time for this. Please accept my apologies for posting again and repeating my mistake.

I only hope that someone will read all what I wrote and would think twice before posting something similar. I do not understand how are you still find will to spend so much time and effort here on people like me; I'd never be able to be so strong as any of you. I wish you all the best in the world for you, your families, and everybody close and important to you, as much as it is possible.
 
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