How to come to terms with possible diagnosis?

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WorryingInOR

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Thank you all for your time and attention. For the last 3 months I have been experiencing a series of symptoms that have me greatly concerned:

  1. Frequent widespread muscle twitching starting in legs then moving all around my body (arms, butt, neck, torso). These are most noticeable when at rest and especially at night.
  2. Atrophy in my dominant hand (pic attached). Hand pain/weakness as well when gripping, typing, etc and occasional cramping. Pain/weakness sometimes radiates up my forearm and into shoulder.
  3. Excessive saliva - no drooling yet but I have to spit more often to clear it out of my mouth.
  4. Tongue quivering and fasciculations. I don't see them at rest but when I stick my tongue out and contract the muscle they pop like crazy.
  5. My cheeks and lips tremble if I hold my mouth open for too long.
  6. Waking up short of breath multiple times a night. Seems worse when trying to sleep on my back.
I went to my PCP who did a basic (what I assume is) neurological exam, tested my reflexes and said everything was fine. He ordered bloodwork to check for any electrolyte or hormone imbalances and everything came up normal. Now they are referring me to a neurologist but I won't get an appointment for 10 days - 2 weeks.

I'm so worried that this is beginning stage ALS. All of this happened within the past few months and feels so sudden. The referral to the neuro has me so scared. How much more will I continue to decline until the appointment? The hand and mouth issues make me worried I have rapid bulbar onset. I'm 34.
 

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lgelb

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We are at a disadvantage not knowing what the clinical findings of the exam were. Sometimes people are referred to a neurologist for risk management reasons rather than real concern about a neurological disease. It would be very unusual for ALs to present in so many different ways in such a short time, so the odds are very much in your favor that you have a repetitive use injury in your hand that is causing radiating pain, benign twitching, and stress/electrolyte or other dietary imbalances that are contributing to the rest.

Saliva can follow a dry mouth esp. if you're holding it open at night. You can record yourself sleeping and see if you snore or gasp for breath, which might suggest a sleep study. Heat and humidity in your bedroom are also things you can tinker with. And of course in our current weather, changing furnace filters more often is a given.

All in all, it is thousands of times more likely that you have issues that are much more treatable than ALS.

Best,
Laurie
 

WorryingInOR

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Thanks Laurie. In your view, does this look like atrophy in my hand?
 

lgelb

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I couldn't say. I can't even hold my thumb as you are. But even if it is, it is much more likely due to something like a repetitive motion injury than a systemic process.
 

WorryingInOR

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Had to wait for a couple days to post again. I'm not sure what you mean by 'clinical exam' findings. Does that refer to the testing like reflexes, weakness, balance, tongue motion, etc?

I was able to get an appointment with a neuro yesterday who also did an exam - clinical exam? - and said everything was normal. They did not recommend I get an EMG. They also didn't seem concerned about my hand, though I am now experiencing odd sensations like faint twitching or tingling all over it. I'm wondering if I should push for an EMG or just let this go as it seems you are saying there doesn't appear to be any ALS concerns with my symptoms?

Thanks for your responses.
 

Nikki J

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Yes a clinical exam is the exam performed by the doctor or other examining clinician ( np or pa). Yours was apparently normal per the neuro and your pcp. given a normal exam and your description of symptoms you should respect the doctor’s recommendations. If you have further concerns follow up with your pcp
 

WorryingInOR

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Thank you Nikki. I will try to respect the opinion of my doctors and move on from this fear.

One more question if I may: is tongue popping or quivering a concern? The past few days I have had random feelings of popping in my tongue while at rest and am now feeling these in my throat. My lip gets numb after this happens. This is the first time I've felt anything while at rest and it's terrifying.
 

Bestfriends14

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These are not ALS symptoms. Your doc and the kind folks here have said to move on from thinking this is ALS as it is not.

Good luck to you and take good care
 

WorryingInOR

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Hi Bestfriends, thank you for the response. I do not mean to be challenging, it's just that I've read so many stories about people in their 30s who had similar symptom onset like twitching and they thought it was BFS. It's just hard to know what to believe but I appreciate your feedback and the kindness of everyone here sharing their direct experience.
 

WorryingInOR

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Hi again, apologies for bumping this back up but I have a question about fasciculations vs fibrillations.

I've read that the 'twitching' in ALS is fine, rapid movements. I have been feeling these in my hands lately, especially in my fingers and palms. The whole digit doesn't move, it's just like a small vibration or twitchy feeling in tips and sides (if that makes sense). Is this a fibrillation? This plus the continued twitching in legs/shoulders and fact that my tongue feels heavier lately + quivering is making me really worried.
 

Nikki J

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No. Fibrillations are only seen on emg they can not be felt. . There are big twitches little twitches and medium sized ones. In the absence of other findings on clinical evaluation ( which you did not have you said your exam was normal) you don’t need to worry about any of them Really really time to move on
 

WorryingInOR

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Hi again, sorry to bother but I have a question about nasal regurgitation as a symptom of bulbar ALS. I have noticed lately that when I eat or drink I feel some stinging sensations in my sinuses, almost like when you have a sinus infection or get water up your nose. It only happening after eating or drinking and is making me scared that it's nasal regurgitation. I tripped over some words yesterday when I was speaking and it made me fall back down the rabbit hole again. Is this what happens with ALS?
 

lgelb

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No. Live your life -- stay away from the rabbits that steal it.
 

WorryingInOR

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I am so sorry to be back but I am needing some information. I did read the sticky and also looked at the anxiety resources I was sent (very appreciative) however I am now getting new symptoms that, taken with all the rest of what I have experienced, seem pretty positive for ALS/MND. Specifically, my throat clicks when I swallow and I have jaw fatigue when trying to chew or eat anything.

My questions are:

Does this sound like ALS (bulbar) symptoms regarding the soft palate?
Would a neuro be able to assess for ALS/MND during a clinical exam without an EMG? I'm worried my neuro - who was at a neuroscience center/hospital here in Portland - isn't qualified to tell since they aren't a neuromuscular specialist?

Thank you so much for any insight you can provide. I really don't mean to pester but I am just so scared all the time.
 
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