Estou há mais de um ano tomando 40mg de corticoide e meu rosto virou uma bola, fora a textura ruim e a acne, alguem pode me dar uma dica que realmente funcione pra desinchar alem de diminuir o sal e beber muita agua?

Who knows what autoimmune condition Applegate actually has, but I'm betting there are quite a few MG patients who were initially misdiagnosed with MS before the correct diagnosis came out. Or misdiagnosed with something else.

I feel for her. Hopefully her story helps others who are going down the wrong path with their treatment.

To keep it short, I have cptsd, major depression, and panic disorder (all diagnosed by a psychiatrist when I was around 15 and reaffirmed during an inpatient psychiatric in 2020). I felt like my body never responded well to medication and I always got to the point of attempts. I’ve tried more than 15 different medications in my lifetime and since 2020 the only thing I’ve felt safe enough to take is hydroxyzine for panic attacks. But now I’m dealing with this disease and the prednisone is causing some severe ideations and depression and my neurologist said the hydroxyzine isn’t safe because of the sedative effects it has. I genuinely don’t know what to do. The last time I was on medications it sent me into literal psychosis because I was overmedicated by an irresponsible psychiatrist who put me on seven different medications at the same time (hence the 5150 hold) so I’m terrified of trying antidepressants or mood stabilizers but I need something to stop these thoughts. I have worked so hard in therapy for the last six years and I was stable and living normally and utilizing coping skills then this disease hit me and flipped me upside down again. I know every med works differently for everyone, I’m just hoping for some suggestions or some advice. I’m supposed to have a thymectomy in November but can’t until I quit nicotine and that’s even harder with having mental health issues exasperated by prednisone.

Just had my teating and my mip and mep is low. Mip is at 46 and mep at 81 but fvc is 97%

Test reads it normal but low mip and mep is caused by neuromuscular disease

All my MG testing has been neg except LRP4 positive....waiting to hear back from my docs

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Hey all, I have only been diagnosed for a few months now but severe symptoms for years. Probably 6 years ago my first symptoms came on. Last year things got much, much worse for me and I have been in hospital several times, but luckily no intubations.

The current plan is cellcept, mestinon, prednisone, IVIG.

Already running into issues and I am unsure how to feel about this.

Mestinon doesn’t really work and we even considered it a fail but my doc told me to try again but only take one or two doses so I don’t end up feeling worse at the end of the day.

Prednisone, they want me on 30mg but I can’t get past 5mg without my blood pressure tanking or fluctuating wildly.

IVIG, had my first rounds in hospital where I was given blood thinners. Last week I suddenly had blood clots in one of the veins on my wrist that I got a dose of IVIG in. Now I am scared to try IVIG again and waiting word from my doctor.

I didn’t really want to raw dog the next 6-12 months to see if the cellcept works but maybe I should. I feel so much worse and unhealthy right now than I ever have in my whole life. Plus some symptoms that don’t fit MG either.

Did anyone else have a rough start to their treatment journey eventually find something that worked and treatment took?

Hello! I have gMG diagnosed ~3 months, but I have had symptoms for over a year (or more). My issue is that I'm working/studying and I need to carry some stuff with me regularly.

The thing is that some of them are quite heavy, like my notebook, water bottle, other electronics and lunch.

Before my MG got worse, I used a bag that I carried on my shoulder, but eventually I couldn't so I changed to a backpack. I was okay for a while, but then I had to get a bigger one until I couldn't carry it well (I also brought a tote bag with my lunch and water bottle).

I got a small luggage and it was good to move around the place, but sometimes I had to carry it myself to go up/down the stairs (the elevators aren't working or are full most of the time). It got a little harder for me to walk with it, but my main issue was that I was being make fun for it.

I know I shouldn't care, but the place I'm at is very judgmental and it can affect my performance (it sucks but I can't do anything about it).

I would like some advice of how you move around when you have to go longer distances and carrying heavy weight, or how I can deal with it in the workplace. Thank you in advance!

We have a family member who experiences this disease in Botswana, the life saving medication is no longer available.

Need advice!

Makes me nuts. The psychological pain and impact a higher dose of prednisone has is unrepairable.

Also prediabetes and weight gain.

I’d rather asphyxiate.

Which is dramatic, but what’s my other option? I will switch to a softer diet, and hope it leaves?
They tested everything expect the swallowing.

I was told it was most likely going to be prednisone.

And it was! (From 2.5mg to 5 mg) I left. After my NIF/FVC was normal. (I had mild SOB nothing worth test.) Also gave me an Xray. Off my baseline for generalized weakness.

Like keep in mind, especially at night I feel like I am struggling to clear my throat to swallow. While in the ER, since I have no survival extinct, I drank a coffee. It went down somehow fine. (Small cup maybe 100ml) and after to swallow my saliva while I spoke, I had to shut up hold my chest and focus to swallow my saliva. Sometimes the mucus blocks my airway.. causing moments of panic. Because I can’t clear it. So for I have been able to eventually.

The intern came and told me I am young a rare disease and I should continue to advocate for myself. Offered to call back neurology. I refused due to lack of time. (I didn’t want my parents to know I was there. It had already been 10 hours.)

If I come back, I better be choking.

Hi friends.

Sorry for the longish rant, I really need opinion and reassuring words. In a rare disease world, those forums that connect thousands of us quickly can feel really soothing.

Since my diagnosis almost 2 years has passed, to be exact, two years will be in 2 months.

My first symptom was very subtle ptosis. Since then I had ptosis (again very subtle) many times, and two times I had disphonia - I lost my voice when the weather was very hot.

If I don't tell you, you wouldn't know that something is going on. I do everything that I was doing before, the eyelid dropping comes only at night if I get really tired and the losing of the voice happened only 2 times for those 2 years and if I manage to stay out of the heat (which obviosly is good in general) I don't lose my voice.

For those 2 years I have been prescribed mestinon only and I don't take it because I only have the subtle ptosis (no voice problem during winter months).

But I start to feel bit of a weakness in my upper arms and I start to freak out big time.

I have been told that there is this 3 year mark since the first symptom where can be expected that the disease will either stabilize or might even get better for around 80 % of the patients, and trust me when I say that I hang on for dear life on this fact.

So my question is, whether you felt this at your 3 year mark and is there someone that takes mestinon only for many years.

I have no problem taking mestinon, but obviosly I am really scared to go further with immunosupressants. I am very scared of the other side effects so if you could share how is your life on immunosupressants I would be very greatful because I am afraid I might be heading there. Do you have any health issues caused by those medications and also did you gain weight, lost hair etc? If you had surgery, how did that affect your disease? My doctor said eventually everyone is put on immunosupressants and emotionally I am not dealling good with this fact.

Thank you so much...

Day three of having goo stuck in my throat and trying to cough it up. I have the unfortunate reality of having both spring and autumn allergies; and man oh man… that tickle in my throat paired with the phlegm that won’t move an inch is driving me insane!

Are we able to take a cough suppressant? about 70% of the time it is me unintentionally coughing knowing subconsciously it’s there and trying to clear it (no other symptoms just allergies)
Or should I try an expectorant? I feel like it would just make it more wet?

Thoughts? Advice?

**Also just had IVIG infusions about two weeks ago, after my first ever crisis. Feel like crap in my legs but resting and doing short walks. Just my throat and not being able to clear it is keeping me up at night and bothering me in the day.

Thank you all and I hope you guys are doing well.

Hey there!

I start sweating buckets as soon as I have a drink. It doesn't matter what it is or how hot/cold it is, I suddenly get super overheated and sweat like crazy. Does anyone else deal with this?

I'm currently on prednisolone and kalymin, but I didn't have these issues before. I have to take the meds, even though they barely help since I have congenital myasthenia.

I also often get watery eyes and head pressure, then I suddenly feel awful and get stomach cramps.

I'm still holding out for better days.

I’ve had a thymectomy and still had eight hospitals confirm I have congenital myasthenia gravis (CMS).

I thought that was impossible, yet all my antibody tests are negative.

I am already sitting on the E-wheelchair because respiratory failure type 2 has formed.

I'd really appreciate any tips you might have!

Have a nice day 🙏🏼

Hi, y’all. My mestinon prescription says to take with meals. I assume this is because of the chance of digestive side effects, but could it be because the drug is less effective on an empty stomach?

Have you noticed a difference in efficacy depending on whether you’ve eaten? I want to get the biggest bang for my buck, so to speak, but I don’t always want to eat when it’s time for meds. Thanks.

I 18F have gMG. 2 years of ocular, 2 years of generalized. Legs breathing and arms where the most affected. Also fatigue. SOB = Shortness of breath.

A month ago I was admitted into the hospital for SOB at rest NIF of -28. 5 days of infusions later I was discharged.

Now since the last 2-3 weeks I’ve been having Jaw weakness. And now struggling to swallow. I did almost chocked on a pretzel and mint today. Also instances where the mucus is in the back of my throat and I can’t remove it. Because I can’t swallow on the first shot. But I often can the second time. Sometimes it’s half swallows so it feels stuck at the back of my throat. Especially thick mucus. I can’t clear my throat at night.

The SOB at rest is coming back but it isn’t suffocating.

I can eat.

What to do? Expect contact my neurologist and the ER.

I am almost sure my hospitalization would have been avoided if my neurologist believed that my SOB was because of my MG and not anxiety. Yes a neuromuscular specialist that specializes in MG.

It is slowly getting worst.
Meds: 175mg azathioprine. 2.40mg/Kg
2.5 mg of prednisone.
No Mestinon causes very painful fasculations.

So I’m achr+ and have ocular mg and was treated with Rituxan. But several months after I woke up with constant pinpricks of light in my vision… Went to an eye doctor and tests came back normal but the neuroopth thinks it neurological. These pinpricks of light even exist with my eyes closed….

As the title says :) would be curious who it’s helped if you’re ACHR+

I love Salvador Dalí paintings…but I don’t want to look like one. I know facial asymmetries occur with gMG, but do they ever get better or go away completely? Or at least stop getting worse? It’s always there but worse in the later afternoon and evening. I’m followed closely by neuro so be assured, this is not a stroke in case that’s what the pic makes you think of.

After a gruesome hot summer in Europe, winter is coming!

I'm a caregiver for my sister (F18) who finally got diagnosed with generalized MG from EMG test last April, negative on both achr and musk test. The symptoms have been apparent for many years. She went through a thymectomy in July and found a type B1 thymoma. The surgeon recommended 33 sessions of radiotherapy right after surgery to ensure the thymoma does not grow back. Now she's on 2x 60mg mestinon, 5mg Prednisone and 50mg azathioprine.

After surgery and radiotherapy, her MG symptoms are getting better slowly. But since last month she has been experiencing severe dystonia, to the point where her jaw has dislocated if it attacks her jaw muscles. I think her neurologist is confused about why it happened and how to treat it because most medicine for dystonia is a muscle relaxer which is a big No No for MG patients.

The dystonia episode usually came right after MG flares up. The episode begins with some random muscle twitch, then, gradually, the symptom worsened until the muscles felt cramped and pulled tight. The episodes can last for several minutes to hours, occurring once to four times a day. Is this related to MG?

I had bloodwork drawn for Myasthenia Gravis over 2 weeks ago at LabCorp. When I checked on it, they said they sent it to another lab for reflex testing. Has anyone’s bloodwork taken this long and come back negative? Or maybe those people may not be in this sub anymore. But just getting anxious to know the results!

Anyone taking Mestinon still advised to take your morning dose day of a surgery? How was the surgery experience?

So, I type well. Former IT typing all day. Even on an iPad keyboard I can screen type at high speed with high accuracy. Was diagnosed with mg earlier this year, and slowly figuring out changes over the last couple of years creeping in are from that. One thing that’s been bugging me is my typing on the iPad has gone to hell. I “know” I’m hitting the right keys But if I don’t check, especially if I’m in a hurry, I’ll often find gibberish from where I clearly hit keys near where I was aiming. Exacerbated by autocorrect making stone really wild assed guesses about what I might have been saying; been asked if I’m drunk more than once. Is that kind of fine motor control issue something I can lay at the foot of the mg? Or do I need to seek another reason I’m loosing the fmc? Had to go back and edit this a bunch before posting.

I’ll be starting it soon until I can get my port placed again in a few months (too many blood clots right now) and don’t know much about it. I’m mostly interested in reactions anyone experiences. I get anaphylaxis with my IVIG if we don’t run it slow enough even with high dose IV Benadryl. My doctor said that most people experience less reactions with the subcutaneous IVIG though so I was just wanting to hear from others. Thank you!

Anybody feel really crummy after their plasma exchange?

I am on round two and this is my second time doing this but I feel pretty off. Nauseous, shakey, back ache, headache and weak and my digestive tract seems to have slowed to a halt (I felt better right after treatment but now as nighttime rolls in the weakness is back. I know it takes more than two sessions to get real relief but I just worry about feeling weak even after having had this done.)

What was your experience with side effects from treatment? When did you really turn a corner?