Could this be ALS?

[Heyitscourtney]

I honestly really hate to do this. I understand how sensitive this is for everyone involved among diagnosed, loved ones, caregivers, etc. I apologize in advance.

I will preface this with I’m a 35 year old female who retired from the navy 6 months ago and experiencing heightened anxiety as I’m still trying to transition into a normal civilian life back in my hometown while I just established with a new psychiatrist. Like many others, anxiety takes over and dr. Google becomes terrifying along with having two toddlers that need me with accompanying anxiety specifically with ALS and MS. I have since refrained from googling anything. However, I was just seen by a neurologist who didn’t say anything about my anxiety and said my “symptoms are consistent with ALS” but my “muscles aren’t jerky and good muscle tone” as reassurance? Not “don’t worry” or “it’s just ‘anxiety”. Scheduled an EEG for next Monday and MRI for a couple weeks from now. I didn’t start googling any symptoms until the fasciculations all over my body.

Symptoms: In May, I started feeling a crawling sensation on my right scalp that would come and go. In June, I was prescribed vitamin D. Then started the severe trapezius and neck pain that I suffered with for nearly 2 weeks until being given an injectable steroid and medrol dose pack of steroids in mid July. A week later, I went to the ER with severe pressure in my head, also while realizing I lost 25 lbs in under 2 months. I would then get sporadic muscle, bone, and joint pain all over my body that was mainly fleeting and off and on. 9 days ago and every day since, all over fasciculations over almost every part of my body to the point my spouse had me log it. Seems to increase at a rest, but if I’m preoccupied, I don’t notice as much. Everywhere from my chin, forehead, lips, arms, shoulders, butt, all over legs, thumbs, stomach, genitals, groin, inside my torso, feet… everywhere. The last couple days thumbs and feet predominately but still elsewhere.

Tingling and occasionally burning on and off on the right/central part of my scalp only. Rapid weight loss: 27 lbs in 6-9 weeks without physical activity. I also still feel sporadic joint and bone pain. I feel pain in the front of my neck next to my throat at times and sometimes have trouble swallowing but it comes and goes. I have had a trigger point massage and an osteopathic manipulative treatment and both seemed to severely irritate my body. Random body aches that would come and go throughout my body ie left knee would hurt for seconds to a minute and then it would move to hip, shoulders, bicep, etc but an aching pain at the base of my skull into neck remains. Random heart palpitations. Had a CT scan scan that showed no occlusions or stenosis and they sent me on my way.

*I was prescribed meds, worked out and ate healthy and never lost this amount of weight in such a short amount of time before. I started eating not as healthy to see what it would do to my weight (normally I’d gain pounds overweight) and I’m fluctuating between remaining the same weight and losing weight.

Adding: I’ve been coughing up a clear thick phlegm that seems really stubborn in the back of my throat. Eyes seem somewhat dry and almost “goopy-er” like I have something in them.

 

[Nikki J]

A neurologist said your symptoms ARE consistent with ALS?? No they are not and it sounds like your exam was normal.

Your weight loss is concerning but not for ALS. I hope you are working with your gp on this.

Are you having an eeg or emg?

Please read here Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

 

[Heyitscourtney]

Neurologist concluded our appointment by definitely saying my “symptoms are consistent with ALS”, however mentioned the “muscle tone is good and reflexes are not jerky” as reassurance? I’m not really sure because I kind of froze at that point. Scheduled an EEG for this upcoming Monday, MRI in 2 weeks, and a follow up neurologist appointment next month.

New GP, as far as weight gain, isn’t concerned. I was overweight prior and I think he views it as a positive thing? He hasn’t been concerned until I asked him if the fasciculations all over is a common symptom of the osteopathic manipulative treatment after then put in the neurologist referral immediately.

 

[abc]

NOTHING you said sounds like ALS. I have no idea what your physician is doing making that statement based on what you have written.

 

[Nikki J]

Either you misheard, completely misreported your symptoms here or your doctor is bizarre. Get your note off the portal and see what they actually wrote. The eeg is not an ALS test. Emg is. Among other things it looks for. Mri is not primarily for ALS either

 

[Heyitscourtney]

Thank you for the reassurance. Seriously, thank you. I know you all aren’t doctors and have real-life experiences with this. I was fully expecting/hoping to hear the “I believe it’s anxiety but tests to rule out anything just in case” and when the neurologist said what she did, my mind kind of went blank afterwards. I’m new to the civilian world of medical after the military. I felt like the VA was more less the same as military medicine, aka awful. I just started establishing relationships with private neurologist, GP, etc. and trying to find my voice when it comes to these doctors. Everything written in the main post is what I expressed to the neurologist because I have a note on my phone of symptoms since they are all so sporadic and coming/going minus the all-over fasciculations.

 

[Heyitscourtney]

Just reviewed the online portal after getting information to set it up. No mention of ALS and says the cause of the MRI is everyday headaches, which I told her I hardly get. I swear on my children she said quote “symptoms are consistent with ALS” but cannot quote verbatim after that and can only paraphrase about muscles and reflexes as anxiety went from 0-1000. I thank you all for who took the time to respond and for the assurances given.

 

[Nikki J]

I strongly suspect she said aren’t and you misheard. However message her and clarify to put this to rest.

We can only say what we already said. Ask your doctor or let it go

 

[lgelb]

Yes, message her. And if you need to shuffle the deck on your mental health team, do so. I would also pass on additional trigger point massage and osteopathic manipulation because in the wrong hands or settings, both can do more harm than good.

I would certainly explore the weight loss with your GP, and make sure you have a good one, in or out of the VA.

As you say, adjusting to civilian life isn't easy and I'm guessing wherever you served there were some issues. You may also have had a bad reaction to the steroid pack, the side effects of which can include mood changes. So I would focus on your mental health first and expect your physical health to at least largely follow. Whatever doesn't is what you and your GP, with appropriate referrals, can work on.

Best,
Laurie