u/Last_Budget_4375

How do you tell the difference between the two? The symptoms sound very similar.

I’m waiting for my appointment with an allergist, but I’m pretty sure I’ve developed MCAS.

While I wait for the appointment, I’m scared of things escalating and getting anaphylaxis. I don’t have an epi pen and I can’t get one until I see allergy in about a month.

How did you deal with this worry/fear leading to your diagnosis before you got an epi pen?

For now I’m just trying to eat low histamine and take Zyrtec/pepcid.

I always wake up with really tight shoulders and my neck hurting/sometimes a headache. I’m pretty sure it’s from the fact that I get so much REM sleep.

Does this happen to anyone else? What do you do to help? I can’t take oxybates so that’s off the table :(

Has anyone ever had a cataplexy episode that mimicked a seizure? Specifically a grand mal/tonic clonic but minus the incontinence, etc

Essentially a full body collapse with repetitive movements/twitches/fluttering

The US and Japan are both currently awaiting approval. This is the beginning of a huge advancement in how we treat narcolepsy.

Was getting an EEG to check for epilepsy, tech said they saw a bunch of episodes throughout, so the assumption was that it’s probably epilepsy.

Got the results. No epilepsy. All the activity was me falling in and out of sleep and dreaming over and over without realizing. Even during the flashing lights and the hyperventilation.

This disorder sucks. I feel like every time I even just blink I must be sleeping/dreaming. I knew my narcolepsy was severe based on my MSLT, but falling asleep during the flashing lights and literally hyperventilating seems ridiculous.

Is there any scenario where seizure activity on an EEG doesn’t turn into an epilepsy diagnosis? I had an in office hour long EEG today (first one I’ve had) and the tech said they recorded several episodes of activity in all three phases but that the neuro needs to review it obviously.

How do you experience one or all of the above? How often? What is it like and how do you feel afterwards?

How can someone know if what they’re experiencing is potentially a sign of epilepsy vs normal brain function experiencing these phenomena?

How many of you had a positive 1-2 hour EEG your first time? I had a tonic clonic two weeks ago (first seizure we know of, but I’ve since learned that having Déjà vu and disorientation as much as I have is also abnormal) and have my in office 1.5 hour EEG in a week.

I’ve seen so many here saying that their EEG was normal yet they later found out they had epilepsy through a repeat EEG or EMU stay.

It feels like since mine happen randomly and don’t seem reliably provoked (flashing lights, etc.), that this EEG has a possibility to be a false negative if I do actually have epilepsy like they think.

I feel at a loss, but my neuro won’t start meds until it’s proven to be epilepsy, which makes sense, but I worry about going unmedicated if my EEG comes back normal and yet I may have it and not know.

Anyways, how many did it take for you to get your diagnosis?

How do you tell between normal Déjà vu and epileptic Déjà vu?

Is it frequency? If so, how often is normal for a person to get Déjà vu?

I get Déjà vu, no lie, about 3+ times a day. I feel a bit disoriented for about a minute afterwards. I never thought this could indicate seizures but now I’m curious about it?

Does anyone else get racing heart as an aura before your seizures?

See title. I have chronic LPR/reflux/stomach issues that doctors are pretty certain are primarily stress-driven.

The issue is, I get in spirals about whether it’s cancer, etc. and am constantly stressed or googling those symptoms or any unrelated new symptoms I get.

It’s exhausting and I’m constantly stressed and thinking I’m dying all the time. I cry a lot from the health issues (I have other chronic illnesses as well that are worsened with stress, like everything), and cry from the weight of OCD.

It leaves me in chronic fight or flight, which makes resolving my reflux/stomach issues much harder. It’s a constant cycle of either symptom -> OCD or OCD -> symptom.

Idk how to get ahold of it tbh. I’m trying to do self-guided ERP because I can’t afford ERP therapy. It helps a little but it majorly stresses me out too in the middle of the exposure.

Does anyone have a red mouth?

Specifically, both sides of the entrance to your throat (that you can see when you look in the mirror) and the back part of the roof of your mouth. The folds on both sides have been red for almost a year and have been described as cobblestoning in appearance and a bit vascular.

ENT, GI, and PCP are all unconcerned. GI thinks it’s PND, ENT thinks it’s LPR, PCP has no clue.

I’ve tried medicines to LPR and PND and it stays unchanged.

Anyone have reflux issues with endo? Did they resolve after surgery?

I had surgery 2 1/2 years ago, but in the past almost year I’ve had unexplainable stomach issues such as reflux, variable in location pain, increase in gas (mainly burping), and chronic nausea.

GI can’t figure it out and has just put me on omeprazole, but it’s not doing anything. Hence why I’m curious if maybe it’s endo back??

Has anyone had chronic burning in their lower throat? It started just over a week ago. Comes in and out. Funny enough, the main relief I get is when I am actively eating.

I’ve been on omeprazole since December when I had my EGD. Only mild gastritis was found. Increased to 40mg omeprazole about 2 months ago because my stomach pains/indigestion were unchanged.

Have become even more strict on my diet since this started. Added in Gaviscon Advance yesterday.

Still nothing seems to improve it. I feel fine otherwise, no signs of sickness. It doesn’t feel like a normal sore throat, but rather just constant burning in my lower throat. Doesn’t hurt to swallow or eat.

Usually feel fine upon waking up and it flares quickly after the first thing I eat. Even this morning, I felt fine, then ate ground turkey, potatoes, and some olive oil and it flared.

I’m at a loss and unsure if this is just reflux or if I need to go to the doctor?

Can mold in a washing machine cause mold toxicity issues? Have been having weird symptoms in the past year. Recently, the washer and clothes have been smelling musty. Looked around and found mold everywhere in the crevices and agitator. Had no idea.

I’ve been having random hives or itchiness with my clothing lately too.

What were your first symptoms or major symptoms that led to you getting tested? I’ve had mystery stomach issues for a year now, with every test coming back normal.

My celiac biopsy + blood tests were negative, but I wasn’t eating gluten for a long time before, and my GI didn’t tell me that would invalidate the test. Trying to figure out if I should revisit celiac as a possibility.

Does anyone act as if they have Celiac without positive testing? My GI tested me for it and it was negative but I had been gluten free for quite a while before the testing. I’ve since found out that you have to be eating gluten for it to show positive if you have celiac.

Every time I accidentally have gluten, I feel insanely terrible. I’d rather not have to go back to eating gluten for months to be able to test again.

Is this anyone else’s situation? Do you just act as if you have it to avoid having to eat the gluten to re-test? I try to avoid it at all costs just in case I do have celiac and it was a false negative, but I don’t want to lie to restaurants when they ask if it’s an allergy or not.

ETA: I promise I’m not trying to be insensitive or invalidating to those of you who have confirmed celiac. I just am trying to figure out the best way forward on how to handle this!!

Has anyone had any or multiple delayed papular (tiny red dots that turn into joined hive-type rash) to one or many antibiotics? Rash starts around the end of the course. Spares the face. Went away with prednisone and antihistamines.

I have had this happen with azithromycin and clindamycin within a few months of each other. Did a drug challenge for azithromycin and it was normal, so clearly not allergic and definitely some kind of delayed response. My allergist is dismissing it all as no big deal and won’t test for anything else.

I’m nervous to take another type in the future and have it happen again or get worse like SJS or DRESS.