Concerned 46 y/o Male

[John76]

I never thought I'd be posting here but here I am. I'll preface this by saying everyone on here who has been dx I pray for you!

1. Sept 2021: Woke up one morning and the back of my tonsillar area was bright red inflamed and the sides of my neck/glands were very enlarged
   1. Note: Since that point I've had worsening pain in my neck/throat, it swells, hurts very much/affecting even me speaking
2. October 2021-current: Consistent/always there fasciculations in my legs (calves/hamstrings) where you can see my skin moving
   1. CT scan of my neck - nothing was found
3. Nov 2021: Met with one neuro team that cleared me by in-office testing
4. Dec 2021: Videofluoroscopic Swallow Study that showed min-mild oral/pharyngeal dysphagia characterized by reduced lingual residue all consistencies with clearer with repeat swallow, reduced hyolaryngeal elevation with resultant trace barium residue on BOT and intermittently in pyriform sinuses, supraglottic hypersensitivity
   1. I know from Dr. Google this particular area in your throat of dysphagia is often associated with neuro-related diseases
5. Jan 2022: MRI of head, neck, brain - the only items that showed were that I have multiple prominent enlarged lymph nodes along my jugular
6. Jan 2022: Met with another neuro team who also cleared me by in-office testing
7. Jan 2022-current: My right foream has become weak (ie: Issues shaving where it just feels weak, quickly) & my four left toes are very stiff (I can't move them all the way up - it feels stiff/bunched when walking)
   1. Another CT scan of my neck - nothing was found outside of enlarged tonsillar tissue
8. Mar 2022 - SLP that I've been seeing says that I have "muscle tension dysphagia" and some mild tongue weakness

This entire time I've had issues sleeping - I'm not up thinking about this, I literally just am having a hard time falling/staying asleep (typically sleeping for 2 hours, then up/asleep every hour after that). I have seen EVERY specialist you possible could see (4 ENT's, 2 allergists, a rheumatologist, endocrinologist, 2 neuro teams) do every test possible... they've found nothing. I'm obviously scared as I know this terrible disease is a disease of elimination & yet no one has been able to find anything.

I've read the signs and symptoms page - I suppose I'm coming here to get some POV on the above if this sounds like ALS/could be ALS etc. I can't thank you all enough - God bless you all!

 

[Nikki J]

2 normal neuro exams are very reassuring. If you feel new symptoms since then return to the doctor for reevaluation. It does not sound like they were concerned about an mnd as they did not do an emg

 

[John76]

Thank you, Nikki - appreciate your response.

Am I incorrect or are some of these symptoms consistent with ALS (specifically the swallow exam reveling what it did, twitching, forearm weakness, this pain in my throat/neck/having some issues swallowing not going away etc.)? Would it be odd to present in my neck as it did (enlarged lymph nodes/inflammation/pain)/to move quickly to twitching/other issues w/n 5-6 months?
I'm just tired of feeling unwell....

 

[Nikki J]

The swollen glands and pain swallowing are not ALS and it seems like the swallow is related to that Twitching is meaningless so you ae left with perceived forearm weakness which could be anything or nothing. So yes it would be exceedingly odd for any of it to be mnd. See your doctor again

 

[John76]

Thanks, Nikki! I think what has me most concerned is the specificity of the swallow test and what it showed in the area it showed with no one being able to find anything/it getting worse in that area.
I'd have to assume the continued muscle weakness/twitching I have in my legs and forearm could be stress/anxiety/lack of sleep.
Would forearm weakness be an area that weakness would start or more common in fingers etc.? I'm super confident I've read you fine folks comment before that any weakness that is related to ALS typically comes after there is noticeable muscle atrophy & it just literally stopped working.
And yes, been in contact with my Dr. today

 

[lgelb]

I would go back to a good internist and get a systemic workup. This could be viral or bacterial. Agree it does not sound like ALS at all.

Best,
Laurie

 

[John76]

Thanks for your help here! I have seen two internists who have given me literally even blood test known to man - the second internist told me “I don’t know that there’s another blood test I can give you”. That’s where some of this becomes frightening for something much more nefarious after 6 months. My key concern is the swallow test and the area of my throat I’m having issues.

 

[Nikki J]

And what did the real doctors say about it ? Not mr google. Like any medical test the results should be interpreted in the context or your medical history and clinical presentation.

 

[John76]

The real Doctors have told me they have no clue why I continue to have swallowing issues (from the beginning of this), pain/lymph node swelling in my neck/throat etc. (all they've been able to find were the swallow results & the lymph nodes in my neck being enlarged) & why I continue to be concerned about why I'm getting worse 6 mons (arm weakness, toes stiff/curling, leg twitching every day) after symptoms began. A second PCP that I saw one time recently told me that you've had every test "you may just have to live with this".

The only medical dx was from the SLP who said she believed some of this was muscle tension dysphagia but said... that doesn't account for why you're having lymph node swelling, pain in your oro/pharynx region, interruption in sleep arm weakness, legs twiching, ear pain etc.

 

[Nikki J]

I changed your interest. You are not diagnosed and thus not a PALS. If your doctors are not up to this see an ent at a university medical center for the swallowing.