My symptoms

[Miggy87]

Previous threads:

Weird neck symptoms

Hello I’m 33 , I am experiencing muscle twitches all over body and my muscles feel weak . I’m getting aches in my arm muscle , neck muscle pain is irritating . Wouldn’t say too painful but like a 4 . Few weeks ago felt like it was hard to keep my jaw close but at night it felt like it would open...

www.alsforums.com

Als concerns

Hello guys . I’ve had a different thread but got closed . I was anxious and could t really explain my concerns well . Mentally wise I’m doing ok I take Zoloft and had counseling for anxiety and that’s calm me down . However im concern about my symptoms because it somewhat points to ALS . ive...

www.alsforums.com

Posted a few months ago but thread got closed wanted to update since finally I got a new dr .
my symptoms
August 2020 - ER after stomach discomfort , no pain just discomfort felt like a stomach flu this lasted a month . This was the beginning of my mysterious illness . Dr thought might be GERD . Lots of burping

September 2020 - started getting dizziness and light headedness , daily . DR ran tests eliminated orthostatic hypotension . Vitamin b12 came out good . Simple heart tests came out ok. Vitamin D was low . CT scan without contrast came out clean . I must admit the fact that all this tests kept coming clean is what made me more anxious than I have ever been .

october 2020 - started getting neck discomfort . Originally I thought I had circulation problems even a clot on neck or somewhere since the light headedness felt weird and wouldn’t go away . Had a life insurance from work ran a bunch of t
ests diabetes to anemia to thyroid . Blood count and what not . Came out clean with blood pressure going on . Suddenly I started having twitches all over my body however more focused on calf’s .

November 2020 - went to ER because the neck pain was shark . It was on my side of neck under jaw . 1 to 10 it was a solid 8. Dr thought could have been a rupture because pain was sharp however I could move my head left and right so he concluded it was just a muscle . Later that month I started having a buzz and tingling sensation on my left middle toe finger. And calf pain and ache . Would wake up as if I had ran a mile .

December to present . Twitching continue , if I stare at my calf’s I can see them ripple and small twitches . Here and there I get big thumpers on arms , very rare on temple and neck sometimes even stomach and back. But legs are daily throughout the day . Can feel this more when I’m resting . After eliminating so many thing ALS is what came to mind . Even Parkinson’s .
do I have clinical weakness ? Not that I know of . Read here many people weren’t aware of their clinical weakness in some areas until drs pointed out .
Some day’s I do feel better than others . Read it’s common in ALS eary symptoms.
I do feel a tight throat and neck . Shoulder blades feel sore . Bubbly frog moose feeling out my throat to mouth.
What the hell could it be , what is wrong with me .
Here’s the update . My dr refused months ago to give me a mri , EGm , suggested anxiety was making me feel worse than I really was . However I used to go to the gym prior to this. I used to feel ok . My symptoms are real I’m aware of how I feel and I know something is not right !!! So when I went to see him for neck discomfort and he dismissed it I did what no one should ever do. I lost it and cussed him out , lol . We went at it I ended up getting the police to escort me out . I felt bad so I emailed him I sincerely apologized , he apologized first .
kaiser permanente assigned me a new primary care dr , and finally today he ordered an eloctrolyte test , b1 and a whole bunch of other tests which he says it’s a start and we go from there . I have an in office appointment Monday and he said we will go from there .
Guys , it feels like all the common illnesses are ruled out and that makes me anxious . I with a lot of gratitude ask you guys one more time for suggestions . Can it be ALS or a slow progressing type .

Attachment - tests dr ordered today

 

[lgelb]

These look like some good tests to get in your case. But as regards your anxiety due to other tests' coming out clean, try not to be. Most issues like yours aren't going to be identified through an "aha" lab test. It would be nice, but no.

Accept that your issues can have many overlapping causes, from stress and anger and sadness about other things, to anxiety about being sick, to maybe diet, sleep and exercise that aren't all they could be -- too much can be as bad as too little.

If Vitamin D is low, I trust you are supplementing?

Your neck seems to be an ongoing thing. It is highly sensitive to posture, support, stress, repetitive injuries. Have you sought out PT?

I do NOT think you have slowly-progressing ALS. What you describe just doesn't fit. Stop trying to do just that, and I think you will see the differences.

Best,
Laurie

 

[Miggy87]

Thank you for your reply . To be completely honest . No , I never really tried to supplement my low vitamin D . I did however drank more milk and maybe increased my sunlight exposure just a bit but other than that I did nothing to address that .
And yes my neck is an ongoing thing . I have a very hard time explaining my dr my issues because the fact that I have multiple things going on it makes me wonder if I have multiple things going on or just one thing causing everything .

As for your “aha “ comment , to be completely HONEST !!! That’s exactly what I’ve been expecting !!! I admit it . This whole time I expected a aha moment lol. The fact that it hasn’t come in fact does cause anxiety. Thank you for mentioning that it gives me a new perspective .

 

[Clearwater AL]

Miggy, you have been searching countless Threads everyday since your last post
going back to January 22. And since you joined November 2020.

You have searched Threads going back to 2008, 2012, 2015 and replies.

Maybe I missed it... have you been seen by a Neurologist yet?

"My dr refused months ago to give me a mri , EGm , suggested
anxiety was making me feel worse than I really was" ??

If you have had an EMG post the Summary/conclusion at the bottom of
the report.

You have dedicated too much time searching this Forum...

 

[Miggy87]

Omg I didn’t know anyone can see that lol .
I admit I’m guilty I’ve read a lot .
because to be completely honest with you , it’s the fact that I’m twitching , feeling like weakness is progressing and the fact that my doctors test couldn’t figure out what’s wrong .
Every test that comes normal gives me the sensation that ALS possibility goes up more .
So many times I’ve read how twitching warranted an EMG or a neurology referral and my previous dr didn’t think it was necessary .
so even in my case I can’t say or boast about a clean EMG because I haven’t had one !! . The more tests I pass the more annoyed I’m getting. I’m sure so many people who went thru an ALS diagnosis felt the same way how each test that came out normal led closer to als

 

[ShiftKicker]

Hi there-

It was requested you not post the last time and you were provided some resources to visit while you waited for doctor's appts. The folk here can not help you as much as specialists can- so it is good you are seeing someone on Monday. Please let us know how it goes after your appt.

 

[lgelb]

Flip it. The reason you are getting tests is because you aren't clinically weak, meaning that an EMG is not warranted in your doc's eyes. If it takes one, and you'll believe it, to get you out of the ALS fear fountain, find someone to order you one.

It is straight up not true that normal tests mean a higher probability of ALS. It just means you don't have anemia, etc. Neither do billions of people who don't have ALS.

Please follow ShiftKicker's request. While you are waiting for your appointment, do some of the things that people with ALS can't, instead of hanging here, where you don't belong.

 

[Miggy87]

Just a small update . My appointment got cancelled until next week . However all my recent lab tests came out normal , which again made me a little annoyed .
My dr didn’t seem too worried he said he’s gonna try to find out what’s going on . Since I’ve been feeling a small buzz or maybe crawling twitching sensation on my left foot toe and radiates to calf with twitching and painless discomfort . He said we can order an X-ray to see . It’s possible he’s gonna get an X-ray of neck and back even tho I’m not sure why he hasn’t mention MRI yet .
Every morning when I get out of bed I noticed my neck and spine cracks a lot and the neck discomfort radiates to my temples. There’s really no pain just soreness on neck . Both my hands have been feeling weak . This April will be the 9th month with symptoms . The twitches I get on my back here and there annoy me . I will update when I see my doctor see if any findings I will ask for an EMG and MRI .

 

[ShiftKicker]

Miggy, you were asked not to post til your next appointment. You are banned from posting til after your appointment.

 

[Miggy87]

So I had my DRs appointment today .
I told him about constant twitching . The buzzing on my foot toe and tingling. My neck discomfort and annoying twitches all over body.
He looked at me straight in the eye and said he’s not concerned about the twitching . Nor spams . Said they are very common , I feel like I didn’t explained to him how they twitch the whole day “ my calf’s” which is annoying to hear that , but he told me to stretch and drink water .
We’re gonna start with an X-ray and a podiatrist referral on my foot to see what could be causing the tingling or discomfort , he said it could be a compressed nerve and one compressed nerve can also cause body wide issues .
I wanted a neurologist referral but he doesn’t believe it’s neurological “ damn I wanted a referral so bad “ but I’m just gonna go with what he says.
I’m still twitching a lot and fingers felt weak . Hopefully I get to the bottom of this soon.

I didn’t mention I suspected ALS didn’t want to be dismissed as crazy or anxiety.

 

[Clearwater AL]

Miggy, once again.... you've been on the this Forum almost everyday
searching old Threads. You've posted 14 messages.

You don't have ALS.

You are good to go. Log off... move on for your own mental health.

You're off to a podiatrist.

There's no reason for you to search any/old threads pertaining to ALS
any further. No one here can help you... the same.

Hope the podiatrist brings the help you need to go on with life.

Be thankful... I relate ALS to a line from the Eagles song "Hotel California"

"We are programed to receive, you can check out any time you like...
but you can never leave."

You can.

 

[affected]

Congrats on this result!
We told you the same thing.
Your doctor is following a path that seems totally matched to your symptoms.
Work with the doctor, stay away from here, no matter how much you twitch, and you are likely to find yourself in good health no matter how long that takes. Please take this a chance to start living a great life.

 

[Miggy87]

Thank you AL I appreciate your words that hotel California line is great .
And thank you affected . I had to screenshot that reply and I’ll keep it in my photos . Because that is my goal , to be in good health no matter how long it takes . I love that quote ty .

thank you all . You’re all loved and appreciated .