Looking for opinions to help ease mind about the possibility of ALS.

[Rene1989]

First and foremost my heart goes out to all those that have been diagnosed with als and the families that it has impacted.

I’m here just like many others, because I fear the possibility of ALS. I already know some of what I post may may have some rolling their eyes because of it not being an actual ALS symptom. PLEASE FORGIVE ME, as I am just looking for some comfort and support.

I am 34 years of age and roughly 6 months ago I got super sick with flu like symptoms that lasted almost 2 months. Never diagnosed with anything just sent to a GI doctor. Had an endoscopy and colonoscopy procedure done and they cleared me of what I initially thought may have been cancer.

After those symptoms started to subside, I started having burning pain that radiates from elbow, through forearm and to hands. Mainly my left but eventually made it to my right. Followed by body fasciculation’s. Started in my legs then everywhere on my body including my face.

My left leg feels like it’s not ok, when I attempt to flex I feel like I can’t feel my calf. Same goes for my left forearm. I can move all fingers and toes with no issues, just a general sense of weakness. My arms and shoulders are starting to look like they are getting smaller and I have a hard time gaining weight.

I have muscle aches throughout my body and continue to yawn consistently and have hiccups all the time with jaw pain (constant yawning is something I did read on Google, yeah I know.) Since the start my ears always feel full and ring a lot. I have had constant lower back and middle burning and aching.

I have seen an ENT and he said everything seemed fine just gave me nasal spray for sinus/allergy issues. Seen a rheumatologist and even though I showed I was ana positive every other marker was normal so I didn’t have any autoimmune issues. I showed I had low vitamin D at a 25 but it’s normal in Michigan.

I have yet to get in to see a neurologist as they are booking appointments into November. I did however receive an EMG/NCS on my upper half from DO not a neurologist. He said I showed signs of ulnar nerve issues and diagnosed me with Paresthesia. He said I do not have ALS, can he tell without doing the lower half of my body?

I feel like my pcp and some family are making me feel like it’s in my head and I’m going crazy, with anxiety taking control. That sucks because I know my body and until recently I have never went to the hospital or doctors. I have had an mri on my head and outside of paranasal sinus disease everything was normal.

Had an mri done on my lumbar area and it showed some Multilevel lumbar spondylosis with spinal and foraminal stenosis in L4-5 and L5-S1. I just can’t get my head out of this downward spiral, these pains and feelings are real and it’s killing me everyday. Also bloodwork and labs are always normal.

 

[lgelb]

If you are looking for someone else to say that there seems no reason to worry about ALS, here you go. Of course, the pains and feelings are real. I would suggest seeing a physiatrist (rehab) specialist who can evaluate whether something like PT could help.

But that what you feel is real to you does not mean you have ALS, a neurological disorder, or any other smoking gun.

Even if you don't think you had Covid, many people are finding out that they did, including many with "flu-like symptoms," without knowing, and that they have a post-viral syndrome. And we already know you have some spine damage, and ulnar neuropathy, both very common, but worth discussing with the physiatrist.

Your anxiety also deserves care. When you say "killing me everyday," you sound like someone who's not living their best life. Counseling can help, in parallel with ruling out something physically treatable, or finding something that is, and treating it.

Best,
Laurie

 

[Rene1989]

Laurie, I really appreciate your response. I have many other symptoms I didn’t even write like constant left shoulder pain and from what I can tell muscle atrophy in my left forearm, facial pressure and numbness. It’s hard to believe one can be dealing with post-viral issues for six months. I was tested roughly 6 times for Covid within this timeframe and always tested negative. I was tested for strep and mono many times and always negative. No brain or spine lesions so my pcp said she doubt it’s Ms. I was tested for ebv like 2 months in and I tested positive but all doctors said it looked to be old and testing positive could mean I had it when I was 5 and it would still show up. You’re right I am not living my best life and my kids are starting to notice. I have my 6 year old asking me if I feel better daily because she prayed for me. It hurts that I can’t get over this sickness.

 

[ShiftKicker]

Hi there-

Here's what Laurie is referencing: Many w/ Evidence of Long COVID & Neuro Issues Never Tested Positive

And post viral issues of any kind can take much longer than 6 months to resolve.

 

[lgelb]

The latest research suggests that COVID can prematurely age every organ and system. We are seeing premature heart attacks, strokes, kidney failure, chronic pain, brain fog, fatigue, and so much more, months to years out from infection, which accounts for the excess death numbers being most striking in young-to-middle-age adults.

Each infection adds disproportionate risk of going long. With infection 2, your risk is greater than it was for infection 1.

Anyone who tells you severe issues six months out is rare is wrong.

 

[Rene1989]

Hello all, just an update. Last week I seen a neurologist and he told me he does not see any signs of als. Crazy thing is ever since that appointment my muscle twitches have increased tremendously and even though it’s everywhere it’s been pretty consistent on my right quad right above my knee. At least twitches 15x a day. My ears continuously feel like they pop here and there, my shins burn and my calves feel super tight. On top of that I have noticed difficulty swallowing and and a consistent clicking noise when I swallow, with my morning hiccups and full body burning coming back.

The neurologist agreed with Laurie and believes I have something post viral and called it post viral dysautonomia. I want to accept that but I don’t want to get my hopes as I feel my symptoms are increasing.