I’m V, an American in Geneva, Switzerland. I suffer from two underlying conditions (myasthenia gravis and Behçet’s syndrome). I tested positive for SARS-CoV-2 (COVID-19, coronavirus, etc) on Tuesday, March 17th.

I saw a lot of AMA requests for COVID patients and requests for patients who had recovered. I’m a freelance writer and I want to help remove some fear by sharing everything I can. Unfortunately, I haven’t recovered AND my doctor fears I’m about to enter the truly spicy period. Please AMA you’ve wondered: how I developed symptoms, how long I had symptoms before a positive test, my symptoms now, how I got tested, what the test was like, how I feel, the situation here at ground central for COVID in Switzerland (University Hospiral of Geneva, where I’m normally treated, got tested, and am being hospitalized now).

Proof of my positive test result: https://imgur.com/a/yTNIgwh

Proof of my underlying conditions: https://imgur.com/a/ZcSR9QL

EDIT: Hey all, thanks for spending the afternoon and evening with me. I have trouble sleeping with the stupid cough. I’ve answered most questions, and a few can find their answers with other questions. Thank you so much for the support and be safe and well!! If you want to follow me, I’m tracking my symptom progression and that’s about it on Twitter at @COVIDSaga.

EDIT2: It’s 5pm, Swiss time, Sunday, 22 March. I’ve returned to answer some more questions I see here, and clear up any issues with my previous answers. Just want to clarify: I’m not a doctor, obviously, so all I can do is tell you what I’m dealing with as a COVID patient on day 9. As an update, after a seven-hour argument between hospital departments on 20 Mar, after the insistence of my neurologist that I come to the hospital in the first place, I was sent back home. I have no idea what my neurologist will say Monday, but I’m not dead yet, sos that’s a good sign. I’ll be around this evening, so feel free to ask more questions if you have them.

Comments: 133 • Responses: 34  • Date: 

Realpazalaza50 karma

What were the first symptoms ?

YoungCOVIDPatient109 karma

Everyone mentioned fever, but I didn’t notice that high of a fever. I noticed that I started to have a cough that wasn’t like any I’d had before, like I couldn’t really catch my breath. It went: cough —> headache —> low fever —> chest pain —> positive result. I definitely noticed the cough before the fever.

nadalcameron40 karma

I can only read English, sorry. What underlying conditions and may I ask what the doctor says about your outcome?

I’m the same age, and my system is compromised from a fight against thyroid cancer. It’s currently spreading through my community and we’re too poor to isolate and feed our child, so I’m concerned with getting it and what it might mean to me.

YoungCOVIDPatient71 karma

As for having already survived thyroid cancer and facing the fact you’re “too poor” to isolate, there aren’t words for how sorry I am. I know the idea of social isolation is great... if your paycheck arrives straight in your wallet via magic, but I know it doesn’t for everybody. The best you can do is: train yourself not to touch your face or mouth, wash your hands like crazy, and if anyone gets too close to you, you punch them right in the snot locker. And again, I wish a lot of countries had a hell of a better system that wasn’t “be safe” or “feed my kid.”

YoungCOVIDPatient25 karma

That’s no problem! I should have considered that before I made them images. FOR THOSE WHO ONLY SPEAK ENGLISH: From my last neurology consult. It says I have generalized myasthenia gravis with positive antibodies and Behçet’s with joint and skin damage, and that the Behçet’s has acted up in the week before our appointment with a skin and oral infection so I was unable to do Cuvitru (an immunoglobulin treatment for myasthenia). As a result, the myasthenia worsened and I was fatigued and my lower (or “inferior”) muscles were very weak.

The generalized myasthenia makes my ability to breathe weaker in general. It’s an absolute shit companion for COVID.

STLrobotech29 karma

Is/was the cough wet or dry? Did the cough have phlegm or no? Did your throat have a constant itch or just every once in awhile you coughed?

YoungCOVIDPatient63 karma

My housemates (people voted most likely to get COVID by making fun of someone with COVID) said it’s strange because it sounds like both a wet and a dry cough, and they were trying to emulate it. My husband said it starts off sounding wet when I start coughing and then it keep going into a dry wheeze that just doesn’t stop. I know there are people coughing up a lot of phlegm and even blood now, but I’m not; it just sounds “deep wet.” As for having an itch, I have a sore throat that only itches once in a while, fairly independent of the cough.

STLrobotech21 karma

Thank you. That puts my mind at ease about my occasional smokers cough.

YoungCOVIDPatient28 karma

While no one can guarantee anything for you, it may help for now that for reference, I do know smokers and this sounds NOTHING like a smokers’ cough, nor does it sound like COPD, etc.

enzomilano24 karma

Can you share an insight of what is like inside the hospital? The mood of the doctors and nurses? What can we do as individuals to support the workers?

YoungCOVIDPatient41 karma

If you find yourself in a hospital or dealing with health care professionals in any other setting, the best thing you can do right now is be patient. These are people really working to the limit of the hours they seem to be able to stay awake for, and they’re still keeping it together. Sure, every once in a while, I run into someone who has just run out: run out of ability to interact with the public right now, run out of give a crap, just run all out, but those doctors and nurses are few and far between.

As for what it’s like at the hospital itself, it feels like the whole thing is a triage. My neurologist wanted me here so I could be observed. She said she informed the ER (“urgences” here) and neurology and it would be no big deal. Instead, I’ve ended up in some random department for another three hours, waiting to be transferred to the place I was supposed to be in the first place. I know there are people who would yell, but at who? All these people who are trying as hard as they possibly can? I’m in the hospital, nothing’s going to happen, and I’ll get there soon.

Raebragus21 karma

Did you notice any soreness in the glands on the sides or back of your neck in the days before your cough?

YoungCOVIDPatient30 karma

So this is a really tough one. Maybe toughest question. Here’s why. I didn’t notice this at all. However, I live with two people who may have gotten it from me (I joked about them giving it to me, but we’ll never know exact mechanism of infection). And their main and maybe only symptoms so far are sore, slightly swollen glands on the neck, sort of under the ears, and severe fatigue. I had the severe fatigue, but didn’t experience the glands at all. Since neither of them have fever or a cough, the Geneva COVID Hotline has told them not to get tested. I don’t know if gland pain is more “flu” like and that’s why, or what. I’m worried they might both be positive and it just looks different than it did for me, but since they’re not “progressing” with symptoms and not tested, it’s impossible to know. I mean, I’d bite my nails over it, but if you’ve seen my other comment... that’s what brought me here. Dammit.

austiggins20 karma

Do you have a suspicion of how/where you specifically contracted it?

YoungCOVIDPatient58 karma

Actually, I was in recommended “isolation” before it was semi-normal, due to my underlying conditions, so these are the only places I could have gotten it:

  • from an asymptomatic carrier living with me

  • from two of my doctors’ offices (I went to see them in the two weeks before I was symptomatic) - they are not general doctors who see coughing people though

  • from the pharmacy I go to, to get my medication, though I always went at first opening before other customers (it’s very small and nothing like an American pharmacy like CVS - think more like a place with a “shopping area” the size of an American living room

  • and I went to the grocery store across the street at opening to get a loaf of bread

But, and this is probably what did me in, despite everything I know, despite my underlying conditions, despite taking immunosuppressives... I still bite my nails. It’s a habit from pain and nerves, and I should have stopped long ago, and I think wherever I “got” COVID... I probably “caught” it by biting my nails after touching something.

Even_Appeal18 karma

From a fellow young person with underlying conditions: best of luck! Sending you love and strength! Are you glad you're in Switzerland compared to the US due to level of care/possible cost of care/etc?

YoungCOVIDPatient36 karma

So... we actually came to Switzerland due to my conditions. We were trying to fight American insurance companies, being denied treatment, etc. I never thought our life would be determined by my crap health, but here we are and it is. I don’t know how to feel about being in Switzerland right now. I feel more confident that they’re handling the situation, doing whatever it takes, versus watching the US (and to clarify, the US government, not the US people, who are doing the best they can) fumble it from thousands of miles away.

BUT Switzerland is also very small, wealthy, and mostly homogenous. Everyone is required to buy insurance here and it’s NOT cheap, but then it really does work pretty well when you need it for something. But it costs more per month than renting a 3-bedroom condo in South Carolina. So... something to consider.

Do I think my chance of surviving COVID is better here? Possibly? We’ll see when all the statistics settle.

EDIT: A reply to this mentions they can’t believe I got on an airplane with COVID and came to Switzerland for medical treatment. I just want to clarify: I mean that we came to Switzerland MANY years ago (five) as part of trying to get my other disease treated. We’re not wealthy - my husband was able to get a job here. My myasthenia developed after we arrived and I have actually been unable to fly or leave Switzerland, due to the breathing problems it causes. I’m, in fact, stuck in Switzerland, ha.

SwissCanuck3 karma

You can get a 3bedroom in SC for 500 a month?

YoungCOVIDPatient1 karma

Well, this is anonymous, so I’ll let it all hang out. In case you want a cheap condo! You can get a 3-bedroom condo rented per month for $850 in Beaufort, South Carolina. It’s a small coastal town, voted best coastal blah blah by small magazines every once in a while. Health insurance in Switzerland for two people is $1014 per month. Your name is SwissCanuck, so I’m guessing you know that they can’t deny you for pre-existing conditions; that’s just what it costs, the end. My husband is extremely healthy and his is $496 of that. I have all the health problems I’ve mentioned, and mine is $498 of that. Then there’s small fee to add up to the cost. The only difference between the two of us is that he can qualify for “supplemental insurance,” which for an extra $20 a month, means he could get it to pay for gym memberships, acupuncture, spas, massages, and various other “healthful” treatments. As I’m sick, I cannot qualify for supplemental insurance at any price, because they fear I would be asking for a spa visit and a massage every week (and they might be right...)

But this is what people talk about when they say Switzerland is so expensive. My husband has a “high-paying job” but the money is gone, to high rent, high insurance, high cost of groceries, etc.

lanator-3 karma


YoungCOVIDPatient11 karma

Oh wow, no, ha. This is a misunderstanding and I’ve added an edit to the comment you replied to. I would never, ever fly with COVID. My husband got a job in Switzerland five years ago, and we came because we thought it would be better medically all the way back then. COVID was never involved. But really, flying with COVID is not just about danger to other people or selfishness. People who fly with pneumonia (which is a complication COVID can often and easily lead to) can experience a HUGE problem flying because the plane pressure can make the disease grow very quickly in the lungs. With COVID, it could be a death sentence. For anyone who sees this, don’t travel with COVID - you could kill other people AND you could kill yourselves.

Also, to answer your question, yes, in Switzerland, anyone can get medical treatment here as a “tourist” if they can afford it. We definitely couldn’t, though. As a tourist, you need to be able to prove you can afford anything you want without any government help. I don’t know a lot about that system (Swiss medical tourism) though, to be honest with you.

Griezmann91114 karma

I am sorry to hear about your condition. I hope and pray that you recover soon.

After detecting, what did the doctor suggest you to do? Like first few things that you should be taking care about or the initial notes from doctor for you?

Thanks in advance.

[Sorry English not my first language]

YoungCOVIDPatient14 karma

Because of my underlying conditions, my doctor actually recommended I enter the hospital as soon as I was positive. I have a bit of a phobia of hospitals, though, and I just couldn’t imagine getting worse, apparently because I have a no imagination, so I stayed home until today.

But I am a very different case than normal. Your doctor, if you’re found COVID positive, will recommend you self-quarantine, etc. My doctor immediately recommended hospital and also recommended I sign a form so they knew if I was okay being ventilated, intubated, resuscitated, etc, in case I became unconscious quickly. Hopefully, your doctor doesn’t say that to you!!!

(Let me know if anything doesn’t make sense in your language).

anotheruser3013 karma

Did you feel like you had a belt tied around your chest?

YoungCOVIDPatient28 karma

Oddly, it actually goes back and forth between two separate feelings. In certain positions, I definitely have that “why am I wearing a corset made of iron” feeling, and then during the coughing, and at a few random times, I’ve experienced a definite ripping sensation. I suspect this is just pain being random pain and I’m not being ripped apart by a grizzly, but it’ll take your breath away. I’m waiting for my chest x-ray now.

NoCureForEarth13 karma

What was the test like? Is it just a swab or how is it done? And how long do you have to wait until you are told whether it's positive or not?

I wish you the best to get through this experience.

YoungCOVIDPatient40 karma

I saw people getting mouth swabs, but I wasn’t that lucky. I definitely had the nose swab. They warned me that it would be a bit unpleasant and just to get through it. They were right - they do push it sort of all the way into your sinus and it’s pretty uncomfortable but it only lasts for about five seconds and then it’s over. They told me it would take two days to get a result, but my doctor called me from her home by 11pm that night to tell me I was positive.

hardnutMitchrobo12 karma

Did you have a dry throat?

YoungCOVIDPatient27 karma

Yes, BUT I don’t think this was a symptom of the COVID. I started drinking less because my throat was sore, and it started feeling drier. So it wasn’t a “symptom” or a feeling at the beginning, but something that developed as I felt sicker and stopped hydrating as much as I should. Hydrate. For real.

stormieormerson11 karma

Are they giving you any medications?

YoungCOVIDPatient17 karma

Not only are they not giving me any medications, but I actually haven’t seen them give anyone any medications except Tylenol. However, they have taken my blood to make sure I don’t have a bacterial infection as a complication, so I don’t know if that involves taking medication at that point?

Alwayssunnyinarizona11 karma

In a way, you should take solace in that. You're stable enough they're not throwing the kitchen sink at you yet. If you wind up with a positive blood culture, they'll certainly throw you on antibiotics.

Take care of yourself, I wish you the best. Our home has self isolated after our daughter brought home a cold. A week of night coughs for her, and pink eye. No fever, fortunately, but I have to assume this is what mild symptoms might look like.

YoungCOVIDPatient10 karma

I’ve been here five years now and I have to say, Swiss nurses and doctors are as dedicated and caring as anywhere. But the Swiss healthcare MODEL is very different. The woman next to me is COVID positive, her cough sounds a bit like mine, except she’s to the point of coughing up blood. I’ve been listening to her for three hours. Do you know what they’ve given her? Oxygen and a Tylenol. They may give her another Tylenol later. I’m not saying this to be mocking, but I have never seen people so hesitant to use drugs and painkillers of any kind in a healthcare setting. If they think this is viral, no matter how sick you are, they won’t give you an antibiotic. It’s an interesting place, really.

I’m so glad to hear your home isolation is moving along! A week worth of night coughs can’t have been fun for anyone, but now you’re all battle-hardened warriors (bonus points if someone snagged the pink armor) and ready for whatever is next.

EDIT: Sorry, wanted to clarify. I said I’m not mocking, because I wanted to make it clear that I wasn’t making a judgment on medication choice. I wanted to point out the difference in medical model. I noticed in the US, it seemed like you’re sick - they throw every drug at it and hope for the best (and this can be dangerous, too). So, US: every drug. Swiss: no drugs. No matter how bad the woman next to me sounded, I agree that if she only has a virus, even if it’s an extremely dangerous one like COVID, then it may be dangerous to give an antibiotic. As for painkillers, I do worry a little there, too. I think there is a middle ground between Swiss and US. Yes, the US definitely went overboard with opioids, no one can say otherwise, but if someone is in 9/10 pain and genuine tears, I think one Tylenol may not be enough. I think most people would agree with me, but perhaps they wouldn’t. Maybe that’s a personal opinion, so that’s understandable! I want to be clear on this AMA though. I am NOT a doctor. My opinions are not going to be as valuable on this topic as someone who did years of medical school in Switzerland or the US. I’m better at just telling you the symptoms I had and how they’re going now.

bois_santal8 karma

Why would you get antibiotics if it's viral ? Not giving it is very good practice.

YoungCOVIDPatient2 karma

Hey there - I actually edited my answer to make it clear that I’m agreeing with you, especially re: antibiotics. I was just trying to point out the different medical models: in the US, they may start throwing different things at it, patients may demand antibiotics and get them (I’ve never seen anyone try to demand an antibiotic in Switzerland, though I’m sure they might), etc. I’ve also made it clear though, that I’m not a doctor, so any statements I make are meant to be comparisons, NOT judgments. I’m not qualified for judgments. Hope it’s clearer now!

Alwayssunnyinarizona2 karma

I hope you're safe, I really do.

One more question - have they mentioned pink eye as a presentation? Both my daughter and my symptoms began with mild pink eye (we have not been diagnosed and the disease is still rare in our county according to the health department which isn't testing) . She's recovering now, less coughing, but I've got a nagging scratchy throat now.

YoungCOVIDPatient3 karma

No one has mentioned pink eye. However, I do have a friend in the US who went into isolation because his daughter had some symptoms and it turned out to just be pink-eye and a cold, totally unrelated to COVID. It seems really unfair right now that with all the COVID concerns, people are still having to put up with regular coughs, colds, flus, complaints like pink eye, even pneumonia without COVID.

Over here, they’re saying 10 days to two weeks for symptoms to go away. It’s not impossible for you to have had pink eye and COVID; I just haven’t heard of them related yet for anybody here. As for the scratchy throat, again, tough to say. 88% of people have fever with COVID, so that’s still one of the first and best symptoms to determine if it’s COVID; then the cough and fatigue. I don’t really feel scratching in my throat when I’m not coughing. In my past experience, the scratching (for me) is caused by my nose dripping, and I haven’t experienced any running nose with COVID, though I understand that now a small amount of people are getting running nose with it. I know for a while, though, they were were saying if you had a running nose, it was more likely to be something else. Good luck, and I really hope you feel better!

AdamInChainz7 karma

Did you feel faint, or even faint completely?

Asking for a friend that's symptomatic with all of your other symptoms.

YoungCOVIDPatient12 karma

I think this would be my issue with it: there are a lot of reasons you might feel faint. It’s kind of like nausea. If your friend has a whole truckload of other possible COVID symptoms, I don’t think anyone, even a doctor, is going to go, “Fainting?? Well, you must be full of shit then! Can’t possibly be COVID!” The people I know who have it, have kind of a satellite of similar symptoms (cough, fever, so damn tired, maybe headache) and it seems like every single one of them has at least one symptom none of the others have. So don’t worry about having every symptom or having an extra weird one; just the general stuff, maybe.

SleepDeprivedMama6 karma

How high is your fever?

YoungCOVIDPatient13 karma

Another (in my opinion?) important one: my fever never went above 38C / 100F, and I’m still sitting here surrounded by people who are 70+ and sound even worse than me (and my cough sounds pretty awful). So I’m COVID positive and never had anything except a low-grade fever. Please don’t assume that you are or will be okay just because you don’t have a big fever.

milolai6 karma

how many days do you think it took from where you were exposed until you showed symptoms?

i hope the spicy period does not arrive -- good luck.

YoungCOVIDPatient6 karma

Another tough one! So between when you get exposed and when you first get symptoms can apparently take 1-14 days, and they’re saying 5-6 days is average. Which means while I could make the assumption that it was something I did 5-6 days before symptoms showed up, it found also be something I did on that Friday, one day before my symptoms showed up on Saturday. The only reason I’m probably able to track it a lot more closely because I was already self-isolating. For example. I don’t think I left the house for days 12-14, so they’re out. Day 11 was a doctor’s appointment. Etc etc. But even that means that I can only narrow it down - unless there are sudden other new cases from the same place I got infected, we may never know for sure.

SniperPanda47806 karma

For how long have you had it?

YoungCOVIDPatient22 karma

Symptoms started for me last Saturday, the 14th, with the “weird” cough, so my doctor is counting this as day 7 since symptoms. They’re using a model (I don’t know the paper?) that days 9-14 may prove the most serious for those like me. Most people may be showing improvement by day 7 - for example, the medical letter I got mentioned an average of 10 days of symptoms.

Zizakkz4 karma

I would like to start off by saying best of luck to you and hope all gets better, no one should have to be going through this.

My question is; how did your difficulty breathing start?

I woke up with a pain in the backside shoulder and I think I maybe putting myself in a panic.

Edit: I understand we may not have the same symptoms but I figured I'd ask. Thanks again.

YoungCOVIDPatient3 karma

It definitely didn’t start in your shoulder, so that makes two of us. Joking aside, i didn’t experience the tightness until I had started to wear out the muscles coughing. I think the kind of pain you’re talking about wouldn’t be the first symptom. Now, to be totally fair, it could be the first symptom of some panic. And in a world where we’re told COVID is coming for you, there’s nothing you can do, good luck getting through it - EDIT: This answer got cut off! Sorry, it sounds AWFUL if I had just ended, “Good luck getting through it.” The ending should have been: “And in a world where we’re told COVID is coming for you, there’s nothing you can do, good luck getting through it - it’s so hard not to feel stressed! Hell, sometimes the news headlines make me feel stressed and I ALREADY have COVID. So I completely understand having a symptom and wondering, ‘Is this the one?’ But I do think for almost 98% of people, it will be either the cough or the fever that hit first or together when they get COVID.”

mycrayfishislit3 karma

Hi! I also have generalized myasthenia Gravis so it’s a bit reassuring to hear from someone that has it.

Do you have diaphragm weakness with your MG and has the coughing increased that weakness?

Which treatments are you on for MG, and is your doctor worried about how the treatments alter your immune system when it comes to fighting COVID19?

Have any of your doctors mentioned trialing the antimalarial drugs with you? They are contradicted in MG but it honestly sounds like it might be worth the risk. Thanks again and hope you are well!

YoungCOVIDPatient7 karma

Hey there! I thought about answering this question privately but it’s possible there may be other MG patients reading this who could le edit so you never know. Also, excuse the definitions I include which you already know; they’re there in case others want to read the answer.

First, I’m very fortunate that while I do have general muscle weakness that’s affected my ability to breathe, I don’t have specified diaphragm weakness (for those not familiar, MG makes your muscles weak and the diaphragm, which helps your breathing, is a huge muscle). Now, unfortunately, trouble breathing is the largest part of my myasthenia gravis for me. I had a thymectomy (a gland called the thymus is removed, and they hope this will help with your MG). In addition to getting a thymectomy, one of the main treatments for MG is IVIG (immunoglobulin by IV).

So. I had a thymectomy 1/2019, but it can take up to 2 years to see full results. And since 2917, when I was diagnosed, they’ve discovered I can’t take IVIG because I’m one of the 1% in whom it causes aseptic meningitis. HOWEVER, they now have subcutaneous immunoglobulin, which I’m on, and it’s the first thing that’s helped with my generalized MG, really.

So medications I’m on, what helped, what might have been different:

  1. The immunoglobulin. It may be helping me fight the COVID. It’s a boost to your immune system from healthy people. I read somewhere they were trying IVIG on some COVID patients, but not the result. Still, I think it’s helping, and if it make it through this without it going too south, I really will.

  2. Not currently on immunosuppressives. This is a tale of two generalized MG COVID patients. We were on the same immunosuppressive (aziathioprine). However, due to sheer luck, we did a trial to have me off mine for a while since it didn’t appear to be helping. This “trial” started just a few weeks before Wuhan. The other patient entered hospital much sooner than me because she had to have her aziathioprine lowered, due to the danger to it stopping her ability to fight COVID.

  3. Prednisone. A blessing, a curse. There was a lot of discussion about whether to decrease or even stop my prednisone once my result came back positive for COVID, but the neurology department decided i needed it more for MG than the danger to COVID.

  4. Mestinon. A random doctor in the ER tried to tell me taking this (a most basic MG med) is now known to hurt the liver with COVID. Neurology Department had no idea what she was talking about, and said it has no effect on COVID at all.

As for the anti-malarial drugs, it’s not come up yet. I just cannot specify how much they’re NOT treating this. Believe me, I was all of the hospital today: I would have seen pills, IV bags hanging, etc. There just weren’t. They’ve tested me for and said they would have treated a bacteria that is the infection they fear is complicating COVID, but that’s it. My doctor made it clear I was here for observation and in case I needed intubation, not to trial any drugs.

And please, please be careful. I thought I was being careful enough but I know I wasn’t. I figured I didn’t really go anywhere crowded or do anything crowded or lick doorknobs, so I’d be fine, and yet. This is NOT a disease to pair your MG with. Socially isolate, tell everyone to fuck off, cover everything you own in hand sanitizer and light it on fire; whatever you have to do. But don’t get catch this crap. Be well!

lax18scrubs2 karma

Hello from NYC! Thank you so much for answering our questions. I hope you are improving and staying strong. I have generalized MG diagnosed October 2017. Had a robotic thymectomy December 2019. The only meds I’m taking are prednisone (30mg-5 months and counting) and mestinon. I was tested for COVID-19 on March 17th...still waiting results. My symptoms are fatigue, shortness of breath, slight dry cough, sore throat and headaches. I have not had a fever. A couple days before I was tested I had a temp of 99.5 F, I am typically 97.5 F.

How did you know if breathing issues where MG or something else? My shortness of breath is kinda like I run out of air while talking and even at rest my breathing feels labored. What do you know about prednisone and its ability to inhibit fevers even in the presence of an infection? I know prednisone suppresses the immune response so i guess that would make sense. Symptoms started probably about 10 days ago. I would call them mild bc I’m not needing any medical intervention. However, breathing and sore throat are definitely the most bothersome. Mind you, I am in isolation and resting, which should help relieve my MG.

It’s just difficult for me to know if it’s MG or COVID-19 symptoms. Any advice?

YoungCOVIDPatient2 karma

I’m going to go through this step by step so I don’t leave anything out, because I was where you are and I wish I’d been there for me (ha, if that makes sense). So: first, about how your thymectomy is still affecting you, second, my symptoms versus your symptoms, and third, normal MG symptoms and drugs versus COVID.

FIRST: I had my thymectomy in January 2019, so I’m about 11 months ahead of you right now. First of all, I know you probably know this but you are MUCH too early to be experiencing any benefit from the thymectomy, so please don’t worry. In fact, if anything, you may still be recovering some from it, and still experiencing some chest tightness (for me, I was recovered within a few weeks, but still had some random tightness for breathing around my scar, and some pain while breathing in the area where the thymectomy was).

SECOND: I don’t want to alarm you, because these symptoms are just so broad, but they really do sound a lot like my symptoms at the beginning when I was diagnosed positive. You’ve got almost the exact same temperature (which I realize is just coincidence, but I also normally run in the 97s, and ran around 99.5 and no higher than 100 for this when I tested positive). But yes, I had the fever, the headache, the dry cough, AND the sore throat. I didn’t have shortness of breath due to COVID at that point, except at the end of coughing. I still think there’s a chance you could have a test come back negative, so do try not to count your shitty COVID-chickens before they hatch, but it just sounds so familiar. That said, my neurologist called me as soon as I was positive and told me to come into the hospital. Because I’m unable to rest in the hospital and this exacerbates my myasthenia HORRIBLY, I almost always try to stay at home, and told her I’d just stay at home and keep an eye on it. She’s familiar with me refusing hospital, so this was no surprise. When I finally called on the 19th and told her that my coughing was causing shortness of breath, that’s when she started telling me horror stories about how quickly it could go bad, about how it was time to stop dicking around (she didn’t use that language, because she’s already German trying to remember words in French and then translate them into English to speak to me - she’s an AMAZING doctor, in general), and that I needed it come to the hospital NOW. So on the 20th, I packed up my bag and went. Now, despite all this, despite her concerns (and she talked to the whole neurology department and consulted a virologist about me), the hospital STILL decided not to admit me. I still have no clear idea why exactly. But it’s also important to know, it’s been two more days, and nothing terrible has happened. I feel miserable, I’m just as bad as I was, but I’m not worse yet - holding steady. So. IF you get a positive, please don’t panic. I almost did after what my doctor said, and I completely understand why she said it (I have a bad habit of not taking my disease seriously enough). But here we are, and I’m still okay. And I really hope you will be, too.

THIRD: Normal MG symptoms VS COVID. Man, is this a tough one. I’ve been dealing with this since I got it. Like, is this COVID or is this just my MG acting up because I’m exhausted, possibly from COVID? Especially after my hospital trip when they didn’t admit it. That absolutely murdered my myasthenia, so the next day at home, my legs were barely working, I had more myasthenia-style trouble breathing, etc. They decided not to decrease my prednisone, despite the fact that it could affect the COVID and make it worse. I’m not sure I’ve heard about prednisone inhibiting fevers, so I can’t really speak to that. But I do think that just in general, anyone with myasthenia and COVID is going to experience both problems, because the COVID will wear you out, and when worn out, you’re going to have myasthenic issues. So if you have to sleep 21 hours a day (I did for a few days), then that’s what’s going to happen. MG + COVID is definitely not Netflix and quarantine; I’ve fallen asleep, in seconds, while talking, so far. So how can you tell if it’s JUST MG or COVID? The cough and fever are the biggest determinants, in my opinion. I’ve never experienced a cough like this in MG, or really any other time of my life. It goes on and on and wheezes. As for the fever, even though I’m low grade, my face is just completely clammy, which I don’t experience at all with MG. Those two symptoms PLUS all the others, are what makes COVID for me. If I just had trouble breathing, if I just had trouble breathing and maybe fatigue, I would say MG. Breathing + fatigue are what makes MG for me. I hope this helps you and anyone else, somewhat.

I really hope you get a negative test result, and if you’re already on day 10 of symptoms, the worst period, according to my neurologist and the virologist she consulted with about me, would be days 9-14, so even if you’re positive, you’re almost through it, I would think. Get well soon from whatever you have, please feel free to reply here or PM me when you get your result or if you have more questions.

nurseadeleigh2 karma

I’m a nurse in the US and I just found out that I have to start self quarantine because one of the nurses that I was shadowing tested positive for coronavirus virus. What tips do you have for quarantine?

YoungCOVIDPatient4 karma

First, I know saying “don’t be afraid” is like saying “don’t think of a purple elephant” but the statistics are with you: hopefully you will not catch COVID, but if you do, you will (probably, as I don’t want to lie) NOT be part of the group with serious complications. Honestly, people don’t realize fully how this is working yet (I mean, I’m sure you do, but right now, you’re thinking about catching it yourself).

There is every possibility that, let’s say, 10 days ago, you woke up with a bit of a sore throat. You drank some tea, hoping it would get better, then hustled in to work. As a result, you never even realized: you were the one who was COVID positive, and actually gave it to the doctor in question. Studies are showing 17.9% of COVID-infected people don’t have any symptoms at all, so maybe you didn’t even have a sore throat. So in general, especially when there’s so, so much we don’t know, try not to let the fear have away with ya.

As for distracting yourself for 14 days, this is where things like Netflix, Kindle, etc come in. With a mediocre book, you’ll still be worrying about COVID. But if you find yourself lost in a great book, you may forget COVID’s number for a while and leave him on “read.” If you have a US library card, your library may be on OpenDrive, where you can rent ebooks for free. Another option is OpenLibrary, which works the same way, but without needing a library account. Now is also a great time for some free trials, like a free trial of Hulu, if you want. In my opinion, Hulu is like the #1 stop of: current TV shows, trashy but distracting shows (90-Day Fiancé, is you enjoy things like that) and cartoons that aren’t for kids (anime and all that). If any of those appeal, try it if you don’t already have it.

I’m: reading a lot of books, watching a lot of a Netflix, and actually finding a lot of new music on Spotify. I decided it was time to update my care log, so I’ve been intentionally exposing myself to “artists related to” artists I like, new albums of musicians I like, etc. And it’s nice to have music when you don’t want silence, but you also don’t want to explain.

schabaschablusa2 karma

First of all, I hope you recover soon!

My question: Are the hospitals already trying out drugs to treat COVID-19?

YoungCOVIDPatient1 karma

I think there are definitely hospitals that are trialing drugs, and maybe they’re doing it somewhere in this hospital too, and I’m just not seeing it. Someone upthread mentioned that if people need it, the hospital should justthe drug on them if they’re sick enough. If they’re trialing drugs, it’s more than likely they’re trying drugs and searching for a solution in the intensive care unit. I really, REALLY wish them the best.

twojags2 karma

Thanks for doing the AMA and so sorry for what you are going through.

Is there any discoloration on your face? Like very red cheecks, white around the eyes and nose?

What are you doing to pass the time and how long did it take from your fist symptom to when you went into the doctor/hospital?

YoungCOVIDPatient1 karma

Part of why I came back was to try to answer questions like this, specifically about symptoms. So, I do look like this BUT here’s why: I’m extremely pale from the illness at this point (the hospital staff commented on it, it was that bad - so if you’re surrounded by elderly, very sick people, and medical staff are STILL commenting how pale you are... um, give up and live your best witch life? Honestly, I’m not sure what someone should do) and my cheeks are slightly red from the fever. I definitely didn’t look like this on day one, and this is not the case, full-time. When the fever goes down a bit, I’m just dead pale. So if you have a fever, it may give you those colors, but without the fever, it wouldn’t have been a symptom for me at all.

What I’m doing: I thought I would be watching Netflix, reading books, having a great old time. Instead, I’m sleeping like I’m on the Olympic team for it, actually. I had my first symptoms on 14 March, I tested positive 17 March, my doctor asked me to enter hospital 17 March, I declined until I experienced overwhelming symptoms 20 March, my doctor told me to come to hospital on 20 March, and on 20 March, they determined after seven hours at hospital, after my neurologist went home for the night, not to hospitalize me (I tested negative for co-infection, and I’m minutes away from hospital by ambulance, which I guess were the determining factors? I don’t really know).

upinsmoke0241 karma

What was the testing procedure like?

YoungCOVIDPatient1 karma

I’m cutting and pasting this answer from the same question asked elsewhere in case you’re somewhere with difficult internet: “ I saw people getting mouth swabs, but I wasn’t that lucky. I definitely had the nose swab. They warned me that it would be a bit unpleasant and just to get through it. They were right - they do push it sort of all the way into your sinus and it’s pretty uncomfortable but it only lasts for about five seconds and then it’s over. They told me it would take two days to get a result, but my doctor called me from her home by 11pm that night to tell me I was positive.”

Cizzar1 karma

What does your doctor think about chloroquine and the antibiotic that seem to work great for patients with severe cases ?

YoungCOVIDPatient1 karma

I’m sorry but I just don’t have information on this. I’m actually not sure what would happen with chloroquine, since it’s contraindicated for myasthenia gravis patients like me.

platyp871 karma

I'm self isolating due to being under imunosuppressant therapy and I was at work in a busy supermarket in London until 2 days ago. Suffice to say I'm scared shitless of getting this thing. If you don't mind me asking, how long do you think it took for the symptoms to show up? i'm so sorry this happened to you.

YoungCOVIDPatient1 karma

Believe me when I say, I can understand your fear. Really. And my doctor put even more fear into me to try to get me into the hospital, because I have a history of not taking my existing disease seriously enough. So she was telling me worst case scenarios to try to get me to come to the hospital. And then they didn’t hospitalize me, so I went home with all these worst-case scenarios in my head! Ha! BUT. This is to say, that I understand how terrifying it can be. They tell you all the things you should fear when you’re immunosuppressed, and then when something like this really comes up, you feel like you’re actually on your own and helpless for it. But I think you’re brave as fuck; bravery is not the absence of cacking your kecks. It’s getting up and putting on a fresh pair of pants afterwards.

FIRST SYMPTOM SHOWING UP: I’ve had a lot of time on my hands now, when I’m not sleeping, and I think it’s most likely that the symptoms showed 4-5 days after getting it, and that I got them from touching something and then putting my hands on my face. I am seriously a “wash your hands” cautionary tale.

Please keep me updated if you want to and PM me if it helps. I know this is a scary time for immunosuppressed people. Take care of yourself.

platyp872 karma

I've been self isolating for nearly 5 days now and no symptoms whatsoever. I'm anxious as fuck, can't lie. I'm an organ transplant recipient, which puts me in danger..... and I'm from Italy. Not from one the worst affected regions, mind you, but my parents told me they're starting to test people and they found a few positives around their area so I can "feel it" closing in to me and to my parents, who are also vulnerable due to their age. I sincerely hope you're feeling better today.

YoungCOVIDPatient2 karma

I’m trying to do the math here. So you’ve now been self-isolating for five days. I think the average for symptoms showing as 5.1 days (though I realize it can be 1-14 days), according to the CDC in the US. So every day past now that you have no symptoms, it’s less and less likely that you have it. Though I do understand that doesn’t help when you have a “feeling” or a slight sign of a symptom or when the news is everywhere like this. I do hope the days keep going symptom-free for you.

mojojojo311 karma

How is covid testing done? Blood sample or mucus sample? How many days have you been in the hospital and how long do you expect to be there? Get well soonest OP!

YoungCOVIDPatient3 karma

My understanding is that they can do it by blood sample or mucus sample. They can even have you just spit in a tube. For me, though, they stuck a gnarly Q-tip up my nose and into my sinus. It took a mucus sample from my sinus, and tested that.

My doctor asked me to come to the hospital days ago but it just seemed weird when it wasn’t serious enough. My symptoms have been progressing though. As for being here, I’m honestly not sure - I would expected it to take me close to the end of the 14-day window, so maybe 5-7 days.