Neck weakness / Tinnitus

[AtTheCircleK]

Good day:

I've been perusing this forum for about a month now, but have refrained from submitting any posts for concern of wasting people's time, however a recent symptom of (perceived) neck weakness combined w/ tinnitus has me worried.

Long story short is since mid December, I (31 year old male), developed pain in the back of my lower neck / C.Spine area, and the high pitched chirping/ringing tinnitus started at the exact same time. When I rest my head to rest/sleep, the tinnitus goes away within 15/30 minutes - it's only when standing or propping my head up, walking around will the tinnitus rear its ugly head. I can move my head from side to side, up and down, but it just "feels" wobbly and my neck muscles do not feel as strong as they used to.

Any thoughts on neck weakness / tinnitus connection and whether this sounds like A. L. S. ? Thank you very much and God bless.


Additional notes:

Before this, I began suffering from body-wide twitching, ulnar nerve neuropathy, perceived swallowing weakness, and calf stiffness in Mid-November. A brain MRI and C.Spine MRI revealed no problems, except a slightly herniated disc (C5 or C6 - can't remember), which the Neuro said is very common and most likely isn't the cause of these issues. EMG test was conducted late November on my arms only (no leg or face EMG) and no abnormalities were detected. Neurologist suggested BFS as a probable cause.

My swallowing difficulties included taking successive swallows, bits of food getting stuck in the back of throat etc. Upper GI/Barium swallow revealed no problems.

Over the past couple weeks, the swallowing difficulties have subsided a little, but the neck weakness has increased. I reported the neck and tinnitus issues to the neurologist in the follow-up appt last week, but he said he wasn't concerned and didn't feel the need for further testing. I am scheduled for another follow-up in March.

 

[AtTheCircleK]

I feel as though I should also clarify I have no trouble speaking, and my tongue is fully mobile/operational.

 

[Luke]

I think the clean EMG makes ALS a very unlikely cause of your issues.

 

[AtTheCircleK]

Thanks for the reply. Of course my scumbag brain refuses to acknowledge this fact. The clean EMG did give me relief for a couple weeks, before the neck/tinnitus issues started. I wish you safe travels.

 

[laurel]

I had a huge episode of tinnitis when I was a student nurse. Went to the doctor and he held my hand and looked into my eyes, "Dear you are very anxious. Why is that?" And that comment made me think about some things going on in my life, and the ringing in my ears disappeared. Maybe that is what is happening with you--just a possibility. Hope so.

Laurel

 

[AtTheCircleK]

I appreciate your reply laurel.

I don't understand how every nurse and medical professional doesn't have hypochondria. I certainly would be terrified if I knew of almost every disease and malady that lurked on the surface of the earth. That being said - I am anxious about having a serious disease, but what came first, the chicken or the egg. I didn't start becoming really anxious until the first symptoms cropped up.

Once in the past, I've had a doctor look into my eyes and ask if I was a closet homosexual when I went in complaining about chest pains... so forgive me if I don't place a wealth of confidence on their medical opinions.

Also, I've had mild tinnitus in my right ear for over 5 years, but this new onset of tinnitus is more of a chirping tinnitus in my left ear, and only occurs when I'm awake (it dissipates when I'm lying down). Because the neck is a fuse box of nerves, I'm concerned that my (perceived) neck weakness is grinding those nerves together when I'm out & about.

 

[laurel]

Well doctors can ask some pretty inappropriate things. When you find a competent respectful one, stick with him/her. Your "closet homosexual" episode is one of the oddest ones that I've heard. One would query some sort of nerve impingement since it improves when you are lying down.

Laurel

 

[Luke]

Additionally, your perceived swallowing issue got better, which wouldn't happen if you had an actual neurological swallowing problem. Despite how your neck feels, the neurologist obviously didn't detect any true weakness, and that's what really matters. These guys know their stuff. Try to trust your doctor a bit more. They'll refer you to a specialist if they have any concerns that something serious is going on, and it just doesn't sound like that's the case for you. Hopefully you get to the bottom of the tinnitus, as I know how annoying that can be. Good luck.

 

[AtTheCircleK]

I appreciate the replies. Luke, the neurologist didn't even examine my neck, or even glance up from his clipboard. He just shooed me out of the office.

The tinnitus has gotten slightly worse over the last 3 days unfortunately, as with the neck pain/weakness feeling. I don't understand how my C.Spine & brain MRI revealed no problems - but these MRIs were completed before my neck issues began. Could they have overlooked something?

I'm also noticing the twitching is becoming more prevalent (probably due to an influx in anxiety). My swallowing is unchanged. I do need a tall glass of water/liquid to wash down any and every meal I have. My tongue feels strong.

I have placed a call with the local ALS clinic this morning for a second opinion and hope to have an evaluation soon - and if there's no weakness found in my neck, hopefully they can point me to a good cervical/spine specialist.

 

[AtTheCircleK]

I'm still working on getting another appointment with a neurologist - my neck weakness and tinnitus issues continue. Can anyone with knowledge of bulbar related dysphagia tell me if the throat ever feels as though it had been administered anesthesia?

 

[sadiemae]

I do know that with Bulbar ALS, the atrophy on tongue is always evident

 

[AtTheCircleK]

Thank you sadiemae. My "strong" tongue is about the only thing keeping me sane - I can talk w/o slurring, tent my cheeks, do tongue rolls, perform tongue pushups (too much?) etc. Of course I'm worrying about throat/neck onset.

 

[sadiemae]

At your age, with a clean EMG, and no real ALS symptoms, I think you can,safely rule out ALS.

 

[AtTheCircleK]

In the past week, my ability to swallow has gotten progressively weaker - and I'm noticing my soft palate is sagging in the back of my throat. It feels like I've got cobwebs in my throat that I constantly need to clear. The neck pain and (cervical) tinnitus hasn't subsided (slightly worse). My voice doesn't sound distinctly nasally yet nor does my tongue have any weakness. My legs are also feeling very heavy. I'll be seeing an ALS specialist on Feb. 5th (this Tuesday).

At this point - I have little hope that I'll come away from the appointment with anything other than an ALS diagnosis (or probable ALS).

If somebody out there can say a quick prayer for me.... :neutral:

 

[vickim]

Sending prayers and BIG HUGS your way! Let us know how things turn out. I hope you are wrong in your assumptions.