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Mfan

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Any insights appreciated. I respect your knowledge and opinions. I streamlined as best I could. Thank you for this outlet and allowing these kinds of posts.

-male, 47, great health until 2 years ago, though have sinus issues and family history of essential tremors. My symptoms not as bad as dad and grandmother. Just some minor movement with hands that increases a bit after physical activity.

-January 2021 left eye inflammation

-October 2021 GP suggested allergy shots

-January 2022 inflammation finally resolved with new treatment, ophthalmologist said autoimmune issue likely

-extensive testing with rheumatologist, nothing found related to autoimmune issues, dry eye issue emerged, tingling sensations in extremities with occasional numbness.

-February 2022 new internal chest tremors

-March 2022 vision issues including light sensitivity, resolved

-Early May 2022 upper left chest pains led to ER visit. Nothing found

-Late May 2022 left hip pain and left leg twitching, chest tremors continued, upper left stomach/chest pains led to wearing of heart monitor, nothing found, requested neuro referral

-Early June 2022 twitching in other areas of body, perceived left arm weakness, tingling feelings up neck and around head. Continued pains in upper left stomach and back led to suggestion of gallbladder removal. GP and surgeon debate the necessity of it. GP puts me on PPI. Body jerks begin. Endoscopy and colonoscopy suggested by surgeon. Gallbladder removal scheduled.

-Late June 2022 see neurologist. Clinical comes out clean. Says check back in 6 months. Leave his office and go for weekly allergy shot. Within 10 minutes, head tingles, yell for allergist, hit the floor. Go to ER, EMTs say seizure, and hospital calls neurologist.

-Early July 2022 get EEG and brain MRI. Both OK according to neurologist's physician assistant. She says I have BFS and that neuro says stop allergy shots. Not sure what happened. Allergist insist was not anaphylactic shock. October follow up with neurologist scheduled.

-Late July twitching continues, body jerks subside. Back pain in multiple places.

-Early August gallbladder finally removed.

-August until mid-October twitching comes and goes... progressively reduces leading to neuro appointment. Loose stools and some regurgitation, presumably gallbladder removal related.

-Mid-October neurologist asks if things are better. I say yes. Does no clinical to compare to initial visit. Heads out of office and says something to the effect of "I was leaning toward something bad, but now I don't know." Check back in 6 months. I was shocked. Didn't expect him to say that and he gave no indication as to why he did.

-Late October twitches increase. Tongue feels numb on tip. Area around my nose feels numb. Fatigued. GP checks for iron deficiency and finds none.

-Early November 2022 body jerks return. Small movemements in left arm at anytime. Specifically I lay down to sleep and something feels off. I know what hypnic jerks are and have had them. This seems different, more like an energy surge. Anyway, a leg or arm jerks, but it is usually the head.

-Early to mid-November 2022. Waking up daily with chest and upper arms shaking. Have throat sensation like tightening. Perceived throat soreness. Swallowing seems more difficult. I speak for a living and mouth starts to tire easily through the day, even on days I do not talk as much. Notice larger amounts of saliva in the mouth. Tongue feels swollen. Muscle pain in arms and jaw pain. Pain behind right shoulder. Feet stay cold.

-Last week had appointment with GP to ask about recent issues. He cancelled due to sickness. Went to walk in clinic and they tested for strep in addition to blood work for autoimmune issues, celiac, and thyroid problems. All non issues.

Thoughts?
 

lgelb

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I don't see ALS or any neurological illness in this but would look around for a good internist to follow you and rule out systemic illness. A walk-in clinic isn't the best spot for an ongoing diagnostic challenge. Of course, more than one thing can be at play.

Off the top, I would want to rule out a sleep disorder (like if apnea causes an open mouth during sleep and/or you have dysfunctional limb movement), viral or bacterial infection, or the "post-infection" period. And if the allergies are not being treated any more, that could play a role as well.

All the best.
 

Bestfriends14

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I'm so sorry that you are going through all of this; it must be frightening. However, this site is for ALS, a motor neuron disease, so sensory issues like you're having, I dont have the knowledge to even begin to guess. Sorry! My only advice is to continue to work with your docs. I sincerely hope you get to the bottom of whatever is going on.

Take good care.
 

Mfan

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So nothing at all that points the ALS direction?

Sleep apnea. Intrigued. I suppose I can ask GP for a sleep study referral and can't go straight to a center. I will check first thing tomorrow on the process. I've thought about post viral issues but feel silly to bring it up for some reason. On allergies, my daughter has two cats in the house. Got them close to just before all of this started. Surely cat allergies couldn't create so much bodily havoc. I've thought about mold testing my house.

Thanks for the comments so far. I am a teacher and plan to have my students do something beneficial for a local ALS group next term.
 

lgelb

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No, you've said nothing that would make me think of ALS.

Yes, some people are very allergic to cats. And some allergies manifest the most as troubled sleep. An allergist can run tests. And a GP can order labs to look for infections.

I would do those ahead of a sleep study, but if your GP thinks it's needed at any point, a lot of information can come even from home studies these days. One low-rent starting point is to video your own sleep.
 

affected

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Did you carefully read this post?

Truly, nothing you have written even remotely points to ALS.
You will do yourself a huge favour if you stay off google and sites like this. I hope you get this sorted and are back to full health soon.
 
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