Is anyone else having a jaw that is always fatigued? I'm down to 10mg of prednisone once a day.

Hello dear community,

I am writing here in the hope that I will get an assessment from you.

I am female, 30 years young and will have my baby in 2023. During pregnancy and afterwards I unfortunately had several infections (angina). During the last angina I suddenly developed neurological symptoms and since then they have been getting more and more frequent.

It started with severe shaking all over my body, the feeling of being extremely excited and the feeling that my left side of my body was starting to fall asleep. This feeling lasted for 3 weeks. Overall it felt as if something had broken out at that moment, perhaps it was an overreaction of my immune system.

I have already been examined neurologically in detail (twice in hospital) and nothing could be found. MRI, EMG, ENG, SEP, MEP, CSF were unremarkable. Only the alkaline phosphatase was slightly elevated.

At the same time, there is now a suspicion of hEDS, but that probably only explains some of my symptoms. I had no neurological problems until my symptoms started, it all came very suddenly and within 1.5 years. My doctor suspected something autoimmune, but nothing concrete has been found so far. The CK level is in the normal range. Last December my ANA levels were slightly elevated, but in January they were back to normal.

Here is a list of my worst symptoms:

• Trembling with every movement (it is worst in the morning, as if my body had to warm up first); as soon as I use a muscle, it trembles - but fear may also play a role here; sometimes my arm shakes even when I'm just using the PC mouse
• When moving downwards (bending, bending) there is a rattling in the muscles, also called "ratcheting" on Reddit (a kind of active gear phenomenon) in all joints
• Wobbly legs, but not always, and at the same time they feel very stiff (worst in the morning)
• Shaky mouth & tongue after eating or talking for a long time
• Intolerance to exercise: when I do even light exercises or carry my child, the corresponding body part shakes and it feels weak. This weakness mainly affects my right arm. I can do all the exercises at first without feeling weak. I just shake like crazy and feel weak afterwards.
• I recently had to carry a watering can for 10 minutes, after which my hand shook like crazy and felt stiff for 3 hours
• My head shakes after a long day or physical exertion, I have to exert myself a lot to avoid the no-no shaking
• Muscles burn faster than before the whole thing, as if they were permanently tense
• My right eyelid often droops more than the left, but not every day; it also usually feels heavier/more tired than the left one
• If I walked a lot the day before, my legs hurt at night
• Muscle twitches all over my body
• Mild gastroparesis and silent reflux

I would be happy if you could give me your opinion on this. I am very afraid that there is a serious neurological disease behind it, even though a lot of tests have already been carried out and were normal. Does anyone know my symptoms or some of them? Do you think this would fit with myasthenia gravis?

New neurologist***

Hello, I am a 24M who got diagnosed last year with ACHR positive MG with no thymoma. My neurologist recommended a thymectomy because we want to take advantage of the 2 year period we get to maximize chances of remission or just general improvement.

We have traveled to India for the surgery and are planning to do a minimally invasive one. We have done a lot of research before we took this step but now we met a different neurologist and she says that she wouldn’t recommend the thymectomy because it will compromise my immunity and says that medicine can help me manage it. This has put a lot of doubt in my parents on whether to do the surgery or not. Kindly share your experience- I do know that chances of remission are low and it might not even help at all, but, I think it’s a good opportunity for me to atleast try.

Just wondering if people who are dealing with this had baseline bad symptoms every day (months/years) until getting any kind of treatment or if it only flared up for periods at a time?

I just switched to a different manufacturer of cellcept and am experiencing pretty intense vertigo. Does anyone have experience with various manufacturers? Could this be why, or could it be something else? When I originally started taking cellcept, it didn't cause any real side effects until I got to 2 g per day. I went to 1.5 and was better, but the vertigo just started the moment I switched manufacturers.

hi ! if anyone is musk positive and on rystiggo please can you share your experience. i just started my 4th cycle of rystiggo and i am on 25mg prednisone.

i have been on prednisone since june 2023 between 25 / 50mg per day. i noticed a lot of redness all over my legs is this normal with prednisone? i have tingling feeling in my hands and feet at night is this normal with MG? i have put on 50 lbs and im constantly out of breath is this normal with MG (not the 50 lbs)? any shared experiences would be helpful. thank you :)

For those of you who have had thymectomy, anything in particular I should ask about in my upcoming consultation w the thoracic surgeon?

I've posted here once before .. just wondering with myasthenia gravis, can you have perceived weakness that is constant, and never seems to let up / get better.. I've had perceived weakness since August 2023 in different parts of my body. Chewing, swallowing, arm, shoulder hand, feet, legs and neck. I have shortness of breath ( but I was told this was asthma ).. sometimes I wake up in the morning shaking all over my body . if I talk a lot during a workday, my left side of my mouth / jaw is somewhat sore by the end of the day into the late afternoon. I go to bed/rest wake up the next morning and its fine and if I don't talk a lot through the day it's fine. I also do have somewhat of a droopy right eyelid. i've also seen five different neurologist and had three EMGs over the last three years and no one can seem to figure it out . they say I'm fine based on the exam. I even visited a ALS/EMG specialist back in May 2024 He said it could be MG but doubtful . Could this be MG? i've also had multiple blood test done for the antibodies for MG and they all came back negative . The reason I ask if this could be MG is because I have read it can present in many different ways. please let me know your thoughts.

Hello, are there any Perth WA people in this group who can recommend a few neurologists? The one I was referred to has declined my referral from my ophthalmologist. Thanks

18f, I recently saw a specialized neuro who thought I have seronegative mg, she said she was worried about crisis and wanted me getting on treatment. Then her supervisor walked in and said I was a dramatic teen girl, and that I was probably healthy and exaggerating. I can’t take care of myself anymore and without mestonin I can barely breathe. The dr did a musk that will probably be negative and won’t do an sfemg. I can’t see anyone else bc of finances and honestly i’m tired of fighting to live when no one will help me. Ik I’ll eventually go into crisis at home and my parents refuse to even take me to the er. My mestinin is likely being discontinued and i’m afraid. I just don’t wanna be in pain or struggle anymore.

I’ve noticed certain things for a while but brushed them off as anxiety but now I think it might actually be MG (and anxiety but that doesn’t cause all of my symptoms). I’ve had shortness of breath for some time went to the pulmonary doctor and it wasn’t all in my head my results were off but I don’t have asthma ect so the doctor was a bit baffled. Then the past year I notice that if I don’t get enough sleep at the end of the day I have ptosis and if I’ve had a long day at night I feel weak short of breath (not sleep apnea) like I could never understand how my friends didn’t feel short of breath after staying up late after a busy day/sleepless night. I thought I had asthma when over tired.

Hi, I (19F) was recently diagnosed with MG about a month and a half ago. I tested negative for AChR, MUSK, and LRP4 but my SFEMG was, according to my neuro, textbook MG. I had chest CT that showed thymic hyperplasia but no thymoma. I currently have a thymectomy scheduled right now in December but still trying to figure out if I should get it or not.

At first my neuro recommended it because MUSK was negative but now she is telling me to wait a year. I don’t know what waiting a year will do and if there’s a possibility of remission I want to take that chance. I’m not 100% on this information but I’ve read that the shorter duration of symptoms has a higher likelihood of remission with thymectomy.

If anyone could please tell me your experience with a thymectomy especially if you’re seronegative I would greatly appreciate it.

Any tips on how to get out of a flare? I took antibiotics (unknownly) that are on the MG cautionary list and it put me in a nasty flare. Don't feel like it's bad enough for an ER visit but if I keep feeling like this I might have to go. No trouble breathing yet or shortness of breath Just Extremely fatigued physically & muscular, with muscle weakness, double vision and I'm having a hard time eating/drinking and occasionally having issues clearing mucus.

Thanks in advance.

I was on the wait list for an appt prior to the one set for Feb 6, as a kind receptionist perked up when I mentioned MG then heard me slur (probably from stressing about the appt being 4 months out) and said she'd keep my info right next to her. Well she called today with an opening next Monday at the perfect time of day (it's 94 miles away). I'm pretty excited about this but nervous. I am undiagnosed - likely for decades and even since age 11 with possible ptosis and at 12 I had to do eye exercises with a brock string. I now see that I have a wandering eye as well. I took a turn for the worse this summer and have added neck weakness and bulbar to the mix, among the other usual things.

I've noticed such a vast knowledge base here and so many experiences, so I thought to ask for any tips for this appointment. It's by far not my 1st neuro appt, but 1st with an actual MG specialist from the list. I am so far ACHR neg (but the numbers are not zero), Musk negative. No LPR4, etc. yet. Ptosis ice tests I've done are positive (the opposite eye even retracts). I have now had every MG symptom. Symptoms worsen with activity and improve with rest and ICE.

Here's what I plan to do to prepare so far:

1. Write up a concise timeline of symptoms throughout my life

2. In filling out their paperwork which they sent me already, I plan to NOT mention any symptoms other than ptosis, and FATIGABLE MUSCLE WEAKNESS and in what muscle groups. From what i've read and experienced, even just today here, there's so much confusion and ignorance within the medical community re: MG that I don't want to mess this up.

3. Print out my time stamped ice test photos

I am aware that further testing will likely be required for a Dx. My goal here is to get a Mestinon trial. My PCP office was not comfortable doing that which I understood.

How does a mestinon trial work? Can they do it in office, or do they send you off with a Rx to try and report back and simply go on your word?

Has anyone had for example a RNS test same day? Is that even possible? I ask because this drive is likely going to be a problem for me, and so i'm leaving a lot of time to stop and rest if necessary. I also have all sorts of ice packs, even for my hands/wrists, so I'll be bringing those in a cooler. I need the most bang for my trip, so to speak. I know I might even need a SFEMG. I've had the regular EMG 8 years ago which did not explain my longstanding hand/wrist/forearm weakness per the neuro (nope - it's NOT your neck).

ANY and ALL tips or advice, experiences are welcome, especially if I sound similar to you in any way. This has gone on far too long and I need treatment asap as I'm definitely getting worse at this point. Many thanks in advance to anyone who can help. :)

Hi, I (27F) have been having what I would consider “classic” MG symptoms for the last year. Proximal muscle weakness, neck and mouth weakness, trouble swallowing, shallow breathing, eyelid ptosis. Basically everything except vision problems.

I had to fight for even a neuro consult from my PCP. Finally got in to see neuro- MuSK negative, ACHR binding negative, blocking was “borderline” (at 27), and modulating was not tested. LRP4 was not tested.

I had a EMG as well with RNS of a single muscle in my hand (which does not have noticeable weakness) which was negative. I had my followup today and was basically told “congrats, you’re totally fine”. He was very dismissive of the “borderline” blocking antibody and insisted we don’t need to retest or test modulating or LRP4.

Neuro told me that RNS is diagnostic and that even if my antibodies were positive he wouldn’t diagnose me because of the negative RNS. I did not have a SFEMG. This seems to contradict a lot of what I’ve read online and was wondering if anyone can give me any insight? Has anyone been diagnosed and improved with treatment despite being seronegative and EMG negative? Is it also possible for both of those to turn positive later on in disease? This neuro has made it pretty clear he won’t diagnose me, wondering if anyone would with these results or if I should just save my energy? Feeling pretty discouraged as he also didn’t offer any other testing (I’ve already had negative brain MRI) or ideas for diagnosis and I don’t know where to go from here. I really appreciate any advice.

TIA!! :)

Hi. I’m achr. Breathing and slurring is my main issue but my entire body is affected.

I’ve failed ivig, soliris with ivig (helps but not consistently) , vyvgart, car-T clinical trial , mestinon, and am unable to wean down on my daily prednisone. Roughly 7.5- 10 mg daily. Am also on cellcept.

Granted, all my infusions have worked to some degree. I’ve even had days where I felt like maybe one day I might get better.But my quality of life is still poor. And I’ll still get very severe dangerous flares.

My neuro wants to keep me on soliris but add sub q vyvgart as well.

Anyone on this regimen?

Background: Congenital MG. Mestinon has been my only medication. However, I feel like I'm needing to take more, more often lately. Maybe age related because I'm old AF now- 65. So often when I eat from the very first bite. It's painful going down and super slow. Like the food is too big for my throat. Is this MG related?

Just got my 1st treatment of Rituximab and treatment didn’t go to smooth had a reaction cleared after 2nd bag of IV Benadryl Then had really low blood pressure the rest of the procedure. Treatment was 4 days ago and I’ve had the spins sooo bad the last two days along with anxiety attacks and insomnia. Has anyone else noticed or experienced this?.. any advice? Mostly the worst in the evenings/ afternoons

I am currently not diagnosed with MG, but I’m curious if anyone who has been diagnosed has had intermittent numbness on one side of their body as their primary symptom. I am currently experiencing intermittent numbness in my left arm and leg. My symptoms seem to improve with movement and physical therapy. The mri of my brain, cervical and thoracic spine have all been unremarkable. I had a chest CT for an unrelated issue and my thymus was found to be enlarged. Of note, I’ve been tired and feeling off since my numbness symptoms started in July.

I have also been dropping things more often, noticed my sense of taste seems off, have intermittent pain in the lower left part of my ribcage, laughing causes me to cough and my breathing feels weird at times, like I’m anxious.

Has anyone had a similar experience?

Hi, I've been suspicious of MG for a while. And terrified of ALS obviously. I am 36F. Seronegative. No eye droop. Limb weakness that comes and goes with exersion. Severe dysphagia and now nasal regurgitation and nasal speech sometimes. I can feel my soft palate fail and then all my words come out of my nose. I feel like Donald duck sometimes. I have a slur that comes and goes. A Neuro told me he doesn't think I have MG or bulbar Als. When I asked what causes nasal speech and regurgitation he said basically MND and MG. So.... it can't be "you don't have it" but also "you have a severe symptom that can't be linked to much else." I'm defeated and scared. I want to try the meds to see if they help me. I am so short of breath when eating but I can also walk a mile sometimes and not get short of breath. The SOB episodes last around 2 weeks and then subside for a month or 2. I was just on Hydroxychloroquine for suspected lupus so I'm wondering if these meds are triggering MG flares. Does any of this sound familiar to yall? My age leans away from bulbar ALS but not much causes this bucket of symptoms so naturally it's in the back of my mind since I was seronative.

They say intermittent fasting is good for autoimmune diseases but for those of you who do intermittent fasting, how do you fast when you have to take meds like Mestinon or prednisone with food? Do you think I can just take the meds on an empty stomach?

Does anyone else feel “weaker” when you're sick? I've had a sinus & ear infection for a couple of days now, wasn't feeling too bad but I started antibiotics this morning, and I've been feeling like complete crap all day.

I'm looking to connect with anyone and everyone that has had a severe autoimmune response to immunotherapy (bonus if it was Nivolumab (Opdivo®) and ipilimumab (Yervoy®) "IpiNuvo combo drug #checkpointinhibitors) and survived or family members of anyone who has been through this.

My mom is currently in ICU on a ventilator with myocarditis and myasthenia gravis. She's gone through PLEX (Plasma Pheresis or plasma exchange) and is being given steroids, IvIG, and immunosuppressants. She doesn't seem to be responding/recovering

The docs keep telling me this is rare and not a lot of research.

Just looking to learn of others experiences because all I have to go off of is "wait and see." And it's excruciating not knowing whether she'll live through all this.

I got myself in a tizzy about something, and then not long after I got a sore throat, and then my throat felt like it was tightening up in the neck area below the crease where your jaw meets the neck. I've been trying to drink a cold smoothie and it feels like mucus or something is stuck in the back of my throat. My throat isn't sore anymore. Jaw does feel a bit weak. The tightening was a bit scary - felt almost like someone gently choking me. Is this a thing with MG?

An MG diagnosis can obscure other conditions that produce similar symptoms. I assumed my shortness of breath and fatigue was my (correctly diagnosed) MG. Years later I found out I had undiagnosed heart disease. Two stents and I feel substantially better. This can be dangerous.

First, thanks to everyone that commented on my last post. Really appreciate it!

So I had another scary night where I barely slept because of difficulties breathing even when sitting in bed. I know I should have gone to the ER but I was desperate to just get some sleep and hoping that would make the breathing better, so I called the doctors office in the morning instead. Got a same day appointment and surprise, surprise, sent home to wait for the antibody blood test results and try not to focus so much on my breathing.. But here is the infuriating part. I asked for mestinon and the doctor said she would consult a neurologist, but the neurologist can't have had the SLIGHTEST idea what MG is because I was told to come back if my arms or legs gave out, but they weren't worried about my breathing!?! So now I'm even less keen to go to the ER because no one is going to believe me unless thing are really bad 😩

But then I have an ok day and slept well the night after so now I'm confused. My diaphragm felt really sore and tired after that night but then I'm fine(ish) the next? Is the medical gaslighting getting to me or am I overthinking the breathing since It's always better standing up and I'm fine(ish) during the day? Ugh I hate this 🙈

Has anyone with MG able to work FT with MG along with being a FT parent?
My MG is very bad the last few months and working has become hard feel like all I’m doing is calling in sick. 😔 I hate it