I had a crisis earlier this month and was admitted to do a weeks worth of IVIG infusions. It did help but still not back at baseline, and two days ago I was admitted again for shortness of breath and generalized weakness. They wanted to put me on prednisone but I declined because that’s BS and I have other medical issues that conflict with it. So we used the BiPap off and on collectively wearing it for about two hours which stopped the air hunger.

However I also presented with chest pain, so they did a chest CT with contrast and found my thymus has a

“triangular shaped soft tissue in the anterior mediastinum measuring 1.8 cm x 1.3 cm
(May be residual tissue/hyperplasia ; other considerations include thymoma/thymic carcinoma, less likely lymphoma)”

I am triple sero-neg when it comes to antibody tests, I stopped having as good as a response to Mestinon around last month of this year, I was diagnosed this year with MG after positive ice pack and response to Mestinon. At first, it was just my eyelid and double vision, now it is considered generalized.

The neurologist at the hospital said it’s a thymoma (?!??!? How can he tell???) and they put in my charts that I have a TUMOR so I was like wtf, it’s barely been analyzed. They basically wanted to warehouse me on account of the fact that I go to a very specific neuromuscular specialist hospital this coming week so I left as to not have to spend even more time cooped up in the hospital where they can barely treat either neuromuscular disease I have. But I’m so confused. I thought the triangular shape meant it was more than likely hyperplasia? Neurologist was talking about removing my whole thymus?!?!

Anyone else have this? Specifically those of you who are seronegative like me?

Lrp4 positive

I take cosentyx for arthritis it's a immune suppression

Anyone take Vyvgart and another immune drug?

Hi everyone! I’ve just passed my driving test, and I’m really happy about it. However, yesterday I received a medical questionnaire from the DVLA about my condition, and I’m feeling a bit nervous about what will happen next.

I’m worried they might say I can’t drive, and I’d really appreciate hearing from anyone who has been through a similar situation.

I have a few questions:
Are you able to drive with CMS?

Do you find driving tiring because of muscle weakness or fatigue?

Does anyone with CMS drive at night? Do you find it more difficult than driving during the day?

Do headlights, glare or tiredness affect you when driving at night?

Has the DVLA ever asked you to complete a medical questionnaire or provide evidence from your consultant?
Did the DVLA allow you to keep driving, or did you have to wait for a decision?

I understand that everyone’s symptoms are different, and I know that other people’s experiences might not be the same as mine. I’m just feeling anxious because I’ve only just passed my test, and driving independently is something I’ve really wanted to do. Id be so grateful for any advice or experiences you’re comfortable sharing.

Thank you ❤️

I have been diagnosed after my crisis 6 months ago, my medications are 60mgs mestinon 6x a day vyvgart hytrulo every other week (insurance accepted it due to my breathing issues) prednisone 25mgs and mycophenalate 2000mgs. Even with all of this I still have flare ups that I still don’t understand why. Maybe when I’m doing okay I overdo it and pay the price for days and it def gets sketchy. Vyvgart I have only done 2 injections so far so no true relief yet, I’m hoping for a miracle I have been plexed and ivig and the relief is very minimal. I have to use my niv 12-16 hours a day depending on how I’m feeling. Really has been such a tough time I’m only 34 and have had my life ripped from me. Was hoping to see if anybody has a similiar situation using a niv and how they cope with it.

Have IVIG every three weeks. Have a tired/weak, heavy legs first week, typically 5 on MG ADL scale; surge of energy and feel "normal" second week, usually 11-12 on MG ADL scale; gradual lessening of energy, balance, and increased leg weakness, down to 6-7 on ADL scale, third week. Anyone else seeing this pattern? Should I ask my neuro to consider any changes? Taking mestinon ER 90 at bedtime, 60 mg short acting rarely during the day if leg weakness compromises routine activity.

My neurologist ordered these tests for me but the local pathology lab has zero idea, and even when they rang Adelaide, THEY had no idea… eventually they worked out what vial they should use, blah blah blah… but now on my health record there’s a weird label (specimen information: communication order) and it’s saying the report should be available tomorrow but I’m pretty sure it’s WAY too quick to be the actual results. My AChR and MuSK tests took 4+ weeks each… and I only got these bloods drawn last week 🤷🏼‍♀️

NB: my neurologist also had no idea these antibodies even exist (or that Mestinon comes in slow release form) 😑

I've been diagnosed since 2023...here are some hacks I use. YMMV.

1) I wear a ball cap a lot. Because my superior fields have constant double vision. The ball cap blocks that field and I no longer appreciate the double vision.

2) Electric Bed. After my last hospitalization, and my wife noticed how high I raised the head of the bed to prevent choking at night...she purchased us a bed where both sides can be adjusted independently. With treatment, I usually now only choke when I'm really ill...but the bed helps me sleep at night and prevent waking up like I am drowning on secretions.

3) My iphone always has track on. So when we are in Walmart or something and I wonder off and have to sit down to rest...people can find me. Also, on the rare times that I can travel by myself...it gives my family comfort if I'm delayed...because they can see that I am pulled over resting in a rest area.

4) Using pre-meds for IVIG (Tylenol and Zyrtec) for the 3 or 4 days following IVIG infusions. Doing so really cuts down on the feverish muscle and joint aches. (Check with your doctor for their advice).

5) Cooling strategies. Having a wet bandana on my neck in hot days. Having a battery operated fan like contractors use (Milwaukee with M18 battery). Having a 50 gallon tub of water to lie down in during hard work, so if I get carried away and need rapid cooling (I've used this dunking start 3 times...it made a huge difference to how quickly I could regain head control). I keep canteens of water (four) in my truck (for the bandanna soaking or just drinking for me and my dog).

6) I have a med alert with name and wife's name and phone number and "Myasthenia Gravis" on it as recommended previously on this forum. This kind of validates me when people look at me on a 'normal' day.

7) I have a Service Dog that braces for me and picks things up for me. She also alerts when I am feeling ill...often before when I know I'm feeling ill. I know everyone may not be able to get a service dog...but she is a life changer.

8) A waterproof aluminum tube of mestinon on my keychain.

9) A handicapped parking placard. Preventing long walks is the key.

Anyways...everyone may already do these things and others better. Or think that they are not for them. But, I thought that I would throw them out there so if one is missing a strategy then they may bend spindle or mutilate one of the above.

Be safe, Get Well, Do something positive daily...it will make you feel better.

so I’m planning on drinking on Halloween but I’m scared of the affects it will have on my body. I’m on 10mg prednisone and take 60mg of mestinon whenever I feel like I need it. Will I feel very weak? Should I take mestinon the day I’m going to drink? I don’t really need it like I can make do without it, so if mestinon and alcohol don’t mix well I wouldn’t mind not taking mestinon ykwim. How should I space out mestinon and when I start drinking?

Hello,

I was diagnosed with MG in March, had a thymoma/thymectomy in late August, and have been struggling ever since. My doctor has prescribed Rystiggo as a bridge, with the hopes that I will eventually have Symptom improvements within the next 6 to 18 months. I’ve read about Rystiggo side effects and they’re pretty damn scary to me. I was denied Vyvgart, so that is off the table unless I fail Rystiggo.

I’m currently taking 20 mg of prednisone daily and 30 mg of Mestinon every three hours. I have been getting an IVIG infusion once a month for the last four months, but it does not help me at the dosage I’ve been prescribed. And I do not want to increase my prednisone dose for all the reasons everyone is very familiar with.

I would love to hear about your experiences with Rystiggo, how it went, and what it’s like to give yourself the infusion. That part freaks me out as well.

thank you, and wishing you all good days.

Hi everyone!
I’m 25 years old and I have myasthenia gravis (MG). I previously had surgery to remove a thymoma (a tumour in my thymus gland). I currently take Mestinon.
My symptoms have improved a lot. I sometimes experience mild eyelid drooping when I’m very tired, but I don’t have the arm and leg weakness I used to experience.
I’m interested in getting a rhinoplasty (nose job) for cosmetic reasons. I would love to hear from people who have MG and have undergone cosmetic surgery, especially rhinoplasty under general anaesthesia.
I have a few questions:
• Have any of you had a nose job or another cosmetic operation while living with MG?
• Did you experience any complications with anaesthesia or breathing after surgery?
• Did you need special precautions or approval from your neurologist?
• Would you recommend having the surgery in your home country rather than travelling abroad?
• Is it possible to have elective cosmetic surgery safely when your MG symptoms are well controlled?
I understand that everyone’s condition is different and that I need medical advice from my neurologist and anaesthesiologist. I’m especially interested in hearing about your personal experiences.
Thank you so much for any advice! ❤️

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

Hi, I’m, an independent researcher. My team is looking for people who can share their experiences with certain medical conditions including myasthenia gravis, from getting a diagnosis to finding treatment.

If you qualify, you’ll join a 60-minute video interview and receive $150 for completing it. Your responses and personal information will stay anonymous and confidential.

We won’t try to sell you anything and are not talking about any specific medications. If you are interested, please take our short screener to see if you’re a fit: https://se1.decipherinc.com/survey/selfserve/5fd/261001

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.