I communicate that I have choking episodes at the end of the day when my muscles have fatigued to the point that things go so slowly down the back of my tongue and my throat that it goes the wrong way.

They do a barium swallow or video fluoroscopy in the morning when symptoms are at their best because I’m not fatigued yet. They don’t mix barium with a meal or get you to eat until you can feel that things are getting bad and then mix it with barium so you can show them what’s actually happening.

Medical staff rely on test results from a small snapshot of time with different textures and consistencies than what you struggle with and then when you tell them what happens when you eat (i.e. food getting stuck below the back of the tongue/throat going into the windpipe when you inhale because it’s stayed in your throat, choking episodes where you can’t breathe during meals) they place more weight on the test than your lived experience of symptoms.

Please tell me I’m not the only one this is happening to. I wish they would redesign how they do this for people with muscles that fatigue with use and improve with rest.

This is kind of venting/question because my neuro is a piece of shit and won't explain anything to me, everything I've learned of this illness is research I've done on my own.

I had been doing great until august, my symptoms were decently well but had a flare up, ended up in ER but didn't go into much further but ever since I've been feeling terrible.

Barely can hold my arms and head up (according to my neuro I'm doing SO great even when I visibly struggle with the little strenght tests he does) and just after walking for a while, when I get home it feels like I'm stepping on needles. I'm so frustrated.

Also feels like actual mestinon could help my case but the hospital would only have the generic version and it sucks ass.

I got diagnosed a couple months ago, probably through a crisis, but I didn't need intubation. Found out about the diagnosis a couple weeks later when I looked at my bloodwork and it showed achr positive since I was stabilized on steroids and was able to go home. Shortness of breath was initially attributed to asthma. Droopy eye, chewing and swallowing issues, but I also had serious TMJ issues, but my asthma doc told me to see a neurologist and got me a referral. Been on Cellcept and Mestinon about a month now, had to navigate the gastrointestinal side effects, but that's under control. Mestinon works wonders, and the chewing, swallowing and breathing issues are under control with it. Probably had this 2-5 years already based on photos showing droopy eyes that weren't serious enough for me to care.

So I'm sitting here bummed, but happy this medicine is working for me. Dunno about thymus yet. I see people really suffering from this disorder and my heart goes out to each and every one of you, but I'd really like to hear from people doing well. My neurologist, who specifically works on MG rather nonchalantly thinks I'll have remission in a year or so and that things should go well. This makes me happy, because unfortunately, forums will often self select for people looking for answers and sharing the bad stuff.

But who's having a normal life, because TBH, you see the horrible stuff, just get out of a bad situation and now you wonder what's the future if you started from a crisis and now are more or less back after a few weeks of treatment? (And no, I don't plan to quit, this shit is great)

Thanks.

I have instant release mestinon. I took a pill last night, but I woke up this morning with the symptoms I get when it kicks in (twitching muscles, dizziness, etc.). I had a gastroparesis flare yesterday so I thought it was odd I didn’t feel my meds kick in, everything felt trapped in my stomach.

Is it possible for meds like mestinon to kick in after that long, have you had that experience?

Every time I do this I feel like a bit of breath leaks out. Is that normal?

I have 3 meds options, 2 different of those that I cannot tolerate. Azathioprine is a cancerous drug that doesn’t help my symptoms well.

So I decided to stop fighting for other treatments or advocating for procedures.

Throw my pills out, and let the MG decide what will be next.

Which in a mental health perspective looks insane. I am willing to try alternative to pharmacotherapy. It’s not a “I am done with my life..”
More of a: I am 18 years old with an incurable illness, whatever happens, happens. I don’t have a severe form of the disease. Regardless, I know it can be dangerous. But I’ll talk to my neurologist (yes I haven’t talked to him about it yet.)
And I don’t know.

I’ll touch grass or something.

I have mild MG therefore I can manage without medication. I am not this oblivious.

Don’t try this obviously.

I’ll use resting, breaks and elevators instead of stairs.

I’ve been reading research papers that say the thymus gland still has a role after adolescence. Specifically that it still produces and diversifies T-cells. This makes me worried that i’ll get sick more often after removal. Also saw a study that it increases risk of cancer later on. Has anyone else heard or looked into this?

I was diagnosed with MG about 7 years ago and it's finally at the point where life getting better. Last week I was also diagnosed with diabetes and to tell you the truth I'm still trying to wrap my brain around this. Is there anyone out there in the same situation and how did it affect you?

I had my pft done when I was feeling okay and mip 47 and mep 58

Doc said thats low.

I mean if its MG then it should be low during a flare right not when I was feeling fine?

What am I missing?

Thanks

My neurologist also diagnosed me with CFS with my gMG. I am ACHR+. I constantly feel like I am moving through molasses and have a hard time most days being out of bed. Even sitting up I often realize I have a hard time holding up my head. I just had my lung function tested and I am realizing how hard it has become to breathe over the past few months. I used to be described as the embodiment of “move it or lose it” and I now shuffle along and have to take constant breaks to sit down.

I had ptosis symptoms for years but after having a virus that left me bedridden for 6 weeks I have gotten so sick within the past 4 months.

I am on Uplizna (loading doses finished 2 weeks ago), prednisone, and mestinon. Half the time I feel mestinon doesn’t help. I am on 60mg/4x day.

I do get a great day every once in a while where I am up out of bed able to bake and craft. It is a glimpse at how I used to be. There is always several days of recovery afterward.

I constantly am torn between feeling like I am being lazy and letting myself get so deconditioned which contributes to the problem vs trying not to overdo it and end up unable to function.

Does anyone else have symptoms or dx similar?

I have generalized myasthenia gravis (gMG). At its most severe, I was barely able to move.

I am currently taking prednisone and tacrolimus. I feel that tacrolimus may be affecting my mental state. It also requires regular blood tests to monitor drug levels, and I have to avoid certain foods while taking it. For these reasons, I would like to switch to another medication.

Are there any alternative medications that could replace tacrolimus and be used for long-term maintenance treatment?

A medication that is more convenient to take and requires less monitoring would be preferable.

Hubby is sick, he never gets sick, ever. So I fear it is the black plague.

I am on cellcept and wondering, for those on immunosuppressants do you do anything different when sick?

He is just walking through the house coughing all over everything I am going to die yall 😭

I thought it might be a good moment to reach out to the community and ask how everyone is doing with their MG right now. Maybe we can all support each other in a thread?

Hi everyone,

I was diagnosed with myasthenia around the start of this year. Since then, I’ve had to gradually increase and taper medication doses several times, particularly prednisolone and azathioprine.
Keeping track of all the changes became a lot to manage, so I built an app called CapsPlan. I hadn’t found an existing app that combined flexible dose-increase and tapering schedules with tracking my medication supply and estimating when I’d run out of each tablet strength.
The app lets you set up individual phases with the duration and dose your doctor has prescribed. That flexibility was important to me because phases can vary in length, and the size of dose reductions can change throughout a taper. It’s a tool for keeping track of a prescribed plan, not for recommending doses or treatment changes.
Tracking up to two medications is completely free, with all tracking features included within that limit. To be transparent, I’m the developer, and I originally built it to solve a problem I was experiencing myself.
I know many of you already use other apps that work well for you, and that’s great. I’m not suggesting anyone needs to switch. This app meets my own needs, and I thought it might help some of you too.
You can find it here:

iOS:

https://apps.apple.com/us/app/capsplan-medication-tracker/id6779642344

Android:

https://play.google.com/store/apps/details?id=com.dxdotm_coding.capsplan

I’m happy to answer any questions, and I welcome feedback or suggestions.

Dominique

Anyone have a Thymectomy even if they didn’t have thymoma or hyperplasia? Did it have any impact on your symptoms?

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?