Undiagnosed Health Mystery (I need comfort knowing this is or is not ALS)

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Apr 13, 2022
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Undiagnosed health mystery

Undiagnosed Health Mystery

Hello everyone I am Shane (21 M, skinny and healthy) who has had an undiagnosed issue for the past few months, here is a write up of everything going on...

**Shane Symptoms Report for Undiagnosed Issue**


Began for a few days in december which consisted of a sore masseter and slight/minimal twitching, these symptoms went away after I stopped taking metoclopramide (5mg once a day for about 1-1.5 weeks).

I originally took metoclopramide (with the same dosage and method as described above) from mid-August to mid-October 2021 and then I took a drug holiday (stopped taking the medication from mid-October 2021-mid-December 2021 where I began taking it again for 1.5 weeks until I decided to stop taking it due to concerns over side effects the medication could cause and because I thought my mouth was getting sore due to the medication. I am still uncertain if the medication is responsible for these symptoms. I have not been on metoclopramide since december and the reason I bring this up is because I know that this medication has been known to cause nerve issues so the medication can be a variable to why I am having these issues

A few days after my symptoms went away I got sick for about a month in January (consisting of a sore throat, cough, and brain fog) (Covid-19 test was negative). Once I recovered from my symptoms, my symptoms came back

In late January, my symptoms were:

sore/tight masseter that would get more tight or sore when pressure is pushed against my masseter region for an extended period of time (such as if I lay on my masseter region, it will get tight or sore)

My soreness would mostly be on the right side of my face, but sometimes the left

My soreness expands from the masseter, sometimes to my jaw, and to my upper neck region especially the upper right side of my neck

Sometimes, my upper right side of my neck/lower side of masseter feels like it wants me to spasm my face towards that direction to calm down my symptoms, I believe I am doing this voluntarily but sometimes I would have a tic in response to the pain (as seen in the video I will show)

These symptoms have lasted from late January to present day; however, around late february and early march, I have developed more symptoms which include:

Minor non-painful muscle contractions where my muscle will pop in and out (sometimes it doesn’t visibly pop in and out but it feels like it does). I have a video example of this happening in my leg that I will show.

These involuntary muscle contractions have happened within my thigh both legs, my calf both legs, my buttocks region, upper arm region, and sometimes upper right side of neck

Other symptoms include a loose arm feeling that would sometimes happen with lower to upper arm area

My legs get tight randomly, usually getting tight when more pressure is applied to muscles or when I am doing simple activities such as walking.

My legs and arms sometimes feel fatigued and a loose type of feeling, despite this, my legs are capable of moving around normally and I am able to lift my legs up normally (as in my legs are not completely weak, or even weak in general perhaps)

My toes randomly have a tingly, tense feeling which is triggered more when I wear socks but sometimes happens when I am not wearing socks. I think my toes might be twitching slightly but I am unsure.

I have been having mouth tension feelings where my mouth feels tense, despite this, my mouth have been completely in control, just a weird feeling in general

I have sometimes felt a popping sensation between my upper lip and my gums that happens when I move my upper lip to make my mouth feel more comfortable

The leg tightness and mouth tension have developed a bit more in the past few days. Recently my legs have been having slight pain but very minor pain. Sometimes it feels like my mouth might be having tics but I have yet to notice anything in a mirror

Sometimes my symptoms are severe, sometimes they are not. My symptoms have been random and I have had them every day, but they are not always constant.

Sometimes I have a popping sensitive feeling between my upper lips and my gums and sometimes my mouth feels sensitive

I have also began feeling slight pain in my legs and close to my back leg area

**Symptoms I am not having:**

I am having no involuntary movements, I am in full control of my body especially my mouth, nose, eyes, ears, and eyelids

I don’t think I have Tardive Dyskinesia, I saw a UCI neurologist that tested me for TD (prior to me developing symptoms throughout my body) which declared that I do not have TD as I was on a low dose of Metoclopramide and the chances of me developing TD at my dosage was extremely rare.

Metoclopramide is known to also potentially cause akathisia and dystonia, both of which I don’t think I am having symptoms of

I do not think it is ALS as this happens mostly in older patients and starts asymmetrically on a foot or hand which is not how my symptoms started. (Hopefully it is not ALS…)

I do not think it is fibromyalgia despite my symptoms being similar, as fibromyalgia mostly happens in women and is more severe

**Possible Causes:**

The cause of my symptoms are not confirmed to be metoclopramide but my symptoms did develop when I was taking this medication; however I developed more symptoms even after I was off of the medication for months and my symptoms did not really start until over a month after I had been off the medication. I was also on a low 5mg metoclopramide dosage. I could possibly have side effects from the medication but I am unsure. Metoclopramide could cause drug-induced parkinsonism and some of my symptoms resonate with this temporary disease; however, a lot of the other symptoms that this causes I am not having such as trembling or a shaking presence or drooling. My grandpa passed away due to Parkinson's so parkinsions might run in my family. I could also be having other long term side effects from the medication that are not anything specifically diagnosable

I am currently low on Vitamin D, my levels are at 17 (I will attach my blood results to this document)

Around the same time I was taking this medication, I was excessively chewing gum for the past few months every day. My symptoms early on did sound like TMD jaw symptoms which my dentist, primary doctor, and an ears/nose/throat specialist thought I could have. I thought this at first; however, I began developing symptoms throughout my body so I am unsure if this could be TMD/TMJ issues. The three doctors I mentioned above I saw for these symptoms prior to my symptoms occurring throughout my body. My dentist and ears/nose/throat specialist noticed that my masseter region was tight when they were feeling/massaging this region. My primary doctor noticed that I did have a slight popping feeling when I open my mouth wide, and It has been originally a bit difficult to open my mouth wide, this however still does not explain why I have had symptoms throughout my body

I have been in my house a lot and have not received a lot of sunlight. I have also not been getting a lot of exercise or doing a lot of activities lately

I do deal with anxiety and minor depression issues, however, I am absolutely convinced that anxiety/depression are not the cause of my symptoms. They may be the reason my symptoms get worse at times when I am already having the symptoms, but I don’t think they are the cause

**Possible Causes/Medications I have been taking**

I currently have G.E.R.D and have been taking PPIs since the summer to treat these symptoms. I have been on the same dosage (40mgs once a day). The PPIs I have been on are pantoprazole at one point, dexilant at one point, and for the past few months I have been taking omeprazole as my preferred PPI. Recently, I have also been taking Pepcid twice a day starting about a week/two weeks ago. The reason I originally took metoclopramide was to treat my G.E.R.D.

I have been on a symbicort Budesonide 80 mcg inhaler (two puffs in the morning, two puffs at night) every day since october. I was originally on a 160 mcg version of this inhaler with the same amount of puffs (4 puffs in one day, 2 at night, 2 in morning) from mid august to mid october.

During my sickness, I took azithromycin 250 mg tablets (2 tablets one day and then 1 tablet for four days) back in late january.

I have been taking digestive enzymes and Zinlori 75

I am taking Vitamin D pills and Vitamin K1 and K2 pills to combat my low vitamin levels

I am taking wart removal medication for a wart at the bottom of my foot for over a year now (treatment done once a day). Verucide wart removal solution applied physically to the war at the bottom of my right foot.

A few weeks ago, I was on cyclobenzaprine for a few days (3 tablets a day) (10mg). These symptoms caused me heartburn and for my G.E.R.D to come back which I have luckily been able to control thanks to Pepcid.

Symptoms unrelated to my medications could be the cause such as a pinched nerve or some other neurological issue (hopefully not)

I bite my hand a lot when i am angry or fail to accomplish a goal, maybe i gave myself a pinched nerve or something? I have also stressed out the part of my neck that always has chronic pain which could be related to me stressing it out?

Potential diseases like ALS, multiple schelorsis, and other nerve issues

**Doctors I have seen**

I have seen a primary doctor a few times + a blood test, a dentist, a walk in clinic, multiple pharmacists, ears/nose/throat specialist, and a neurologist. I called my gastrologist and pulmonologist at one point.

My primary doctor does not think the metoclopramide is the cause of my symptoms and does not think I have TD; however, she does not know what I have and she referred me to see you for a second opinion

My neurologist tested me for TD and that is it, he was not that helpful in figuring out my symptoms; however, I saw him before symptoms spread throughout my body

My ears/nose/throat specialist and dentist thought I could have TMD or TMJ; however, I saw both of them before symptoms spread throughout my body.


I recently saw my neurologist which said it could be from anxiety or an undiagnosed issue, he said I could get an EMG/NCV test, MRI scan, see an endocrinologist, rheumatologist, and get a CK Muscle Enzyme Test. My neurologist thought that the medication (Metoclopramide) did NOT cause my symptoms but is unsure what is wrong with me, he thinks it is not a neurological issue rather an issue with my muscles.

So this is a copy paste post i make on multiple threads to find out what is wrong. On this ALS fourm, i want to hear your guys input on my symptoms, an explanation of how my symptoms do not connect to ALS, if ALS can even start with asymmetrical tightness on the right side of my jaw/masseter/face/upper neck, What i could possibly have, why my symptoms are not going away, what I should do beyond the steps I labeled, any help in general will be nice to hear. My pain has consistently occurred in my upper neck/lower jaw line
Crowdsourcing your next medical move and basically disease-shopping is not a smart play. I'm certainly not going to participate, as there are potentially thousands of issues you could have, or not. All I can say is there is no reason to even consider ALS, a statement with which your neurologist evidently agrees.

But if the pain is most persistent in your neck/jaw, I would follow up with your ENT and dentist; certainly gum-chewing and hand-biting could contribute. A night guard might help.

I would also find a better counselor with whom to discuss your anger and frustration, and an internist who can review your conditions/meds and suggest whether you could fine-tune your regimen.

I am also closing this thread so that none of our other members, who deal with so much, do not feel compelled to read through your post, which does not belong here.

You will find best answers where you are, not anywhere on line.

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