My daughter is six and has Myasthenia Gravis. It took a long time for her to be diagnosed and an even longer time for me to understand her relationship with food. She struggles with stamina for chewing and doesn't do well with chewy, hard and/or large/difficult to bite foods (burgers, sandwiches). I cut her meat into small pieces, steam/puree veggies and give her plenty of moist and soft options like pastas, oatmeal, eggs and rice. Her normal lunch these days is a heated thermos of pasta, some fruit and/or cheese stick. I'm looking for some varied options, was hoping to get some suggestions. Thanks!

I'm waiting for my results to come back from the lab. Spent five days in the hospital. I'm feeling very vulnerable, not knowing if I will be able to return to work as a truck driver to support my family. I've been blessed with good health all my life and to be hit with this is a little too much to handle.

Here’s a totally random post.. so I had my genetics done and many of my HLA alleles are connected to Nordic genealogy aka the Vikings. Interestingly, I also have antigens to covid and HIV. I discovered an article that descendants of the Viking era and black plaque carry this rare HIV antigen. I’ve never had covid and I wonder how many of us are connected through our ancestry since Myasthenia Gravis was a susceptible HLA allele which I have which is connected to my genetics.. I know random post but I found it amusing 😂 Since I know I’m hereditary connected to Queen Mary of Scott’s I wonder if King George and Queen Mary had Diamond Blackfan Anaemia (folate deficiency) which can lead to psychosis and schizophrenia untreated… which in theory is why I’m having success taking folate.. random yep but fun fact lol

Hello. No official diagnostic but for a month I have developed quite a few strange symptoms. It started in my left hand which became quite low on dexterity, heavy and feeling weak sometimes but i could still hold the same weight as before, it just feelt tired and more of a percieved weak feeling and it was not constant. I also once feelt like i had 0 endurance with it and could barely hold anything but it got better with rest, but it was just that once but then it also came into my left leg and right leg,, a weak, heavy kind of feeling that strangely got better with more movement i did with those legs and soon the left and right hand as well became like this as well.

Now i`am also experiencing shortness of breath and sometimes feeling like my jaw "remains blocked" for 1 sec but its more rare that part

I should also mention that i visited a neurologist a month before these symptoms for some diziness i had and he noticed one eye was dropping more than the other which I observe it changes in the course of the day

Did anyone else develop food allergies about the same time they were diagnosed with myasthenia gravis? I got diagnosed five years ago same year as I developed a shellfish allergy and I’m pretty sure I’ve developed an allergy to alcohol.

If you did, did a thymectomy help?

Has anyone ever experienced this? my right hand is super weak right now, my left is fine. i am trying to use a lighter to light a candle and I can’t do it with my right hand but fine with my left?

Is this normal with MG? i have been feeling extra weak lately but is it normal for one hand? this has been going on for a couple of days

i got prescribed focalin for my adhd and i am scared it is that but i also did heavy lifting with my right hand last week so i dont know, im just scared…

It's been a week on Mestinon since they changed my diagnosis from MS to MG. Since starting Mestinon I am getting fevers, leg muscle spams I haven't had in a decade, fatigue/lack of interest, problems with air getting caught in my chest, grinding my jaw, and I don't want to eat.

Anyone else have this?

Anyone else experiencing (confirmed) false positive HIV results due to MG or any other autoimmune interference?

recently i got a report of a positive Rapid HIV Test

i’m in the hospital waiting for the second HIV test now and pretty nervous 😣

i found out some autoimmune diseases may cause false positives HIV results but not sure if MG can cause the false positives result

Hello everyone, I hope you’re doing well. I sincerely apologize for the bother, but I’ve been experiencing some very concerning symptoms lately, and I wanted to share my experience. Let me rewind a bit: last August, I started feeling some pain in my calf, which was followed by twitching in various parts of my body, including my calves, arms, chest, and more.

By September, when college started again, the twitching continued, but it wasn’t too alarming at the time. I noticed some mild speech issues and persistent pain in my calves. However, things took a turn in October when I started experiencing a lot of unusual symptoms. These included tongue biting, either when speaking or even when my tongue was resting in my mouth, worsened speech issues, and teeth clashing when talking. Despite asking around, no one seemed to notice anything strange. I also started feeling burning sensations and pins and needles in my extremities, along with blood pooling in my left hand.

By November, the burning and pins-and-needles sensations and calves pain subsided, but I developed a lisp on the letter S and noticed my tongue had become scalloped. I also experienced chest pain, stiffness in my right hand and arm, and knee pain in my previously injured knee. There’s also been teeth clashing, nasal regurgitation (though not every time I eat), and, of course, twitching. The pain in my arm seems to lessen when I take a warm shower, and I’ve noticed that my speech is clearer in the mornings. On some days, I don’t bite my tongue at all and my speech seems really clear. I don’t have any voice changes.

My twitching is mostly in my left eye and arms. I’m only 20, female, and Black. No history of ALS in the family. I mostly twitch everywhere…😢

Hi all I found several research papers that advocate 5mg folate per day to reduce MG symptoms. I did this myself starting Monday a week ago with 5mg for 3 days followed by either 2.5mg or 5mg and have had a radical shift in my symptoms. I was initially treated by my haematologist many months ago but had a severe reaction which I now realise was due to lactose tablet coating as I’m allergic to milk and I was also receiving B12 which increases allergies. It seems that both covid and the vaccine put us into a state of folate anaemia. I have stopped all B12 as this was definitely making me worse and just taking folate now which a significant shift in my symptoms. Adding some research articles for you to review.

https://journals.sagepub.com/doi/10.1177/20503121241253957?icid=int.sj-full-text.similar-articles.7

Vent/rant.

It was confirmed, but I still didn't get antibiotics. Last time I got so bad I couldn't drive myself to the ER, because every muscle started cramping and shaking just from sitting up.

It is the middle of the night around here, I don't know why I woke up. I have a cough as well, I had it for months. Every time I cough my diaphragm is cramping.

The last few days I have been sleeping more than I have been awake. It's like I can't stay awake. I do understand that antibiotics need to be regulated, to not cause resistant strains, but hey, I am really struggling with kind of basic things, like breathing or just getting out of bed.

I took an extra dose of prednisone, that helped a bit. My muscles still start jerking with any little movement, Mestinon helps but when I have an infection, it's always so much worse. I actually developed social anxiety because of it, just doing normal grocery shopping is horrible.

I don't know how I got so bad so quickly. Well, I will live to see a new day, and I won't give up before I get those antibiotics.

To make a long story short, I started getting IVIG 1x a week for the next 12 weeks for AGID. It equals out to being 1.6g/kg a month. I was told this would help the Myasthenia too. Well I’ve had 2 infusions so far and I feel no difference whatsoever. Is this normal? Does it take more time to feel a difference In symptoms?

I'm getting evaluated for MG ATM and it only just occured to me that possibly the reason why Amitriptyline made it harder for me to swallow and I couldn't tolerate it was due to it acting on acetylcholine...I thought it was an allergic reaction this whole time but the throat swallowing issues happen every day for me now even lying down it feels like my throat collapses a bit.

Has anyone had those issues?

This is very long but it has been an emotional day. Besides needing to write this all out, I hope the story of my diagnosis ensuing year might be useful to others.

Last October I noticed subtle problems that I thought might be all in my head or explained away - blurry vision (but my eyes are shit and I’m always on a computer), needing to work to enunciate after talking for a long time (but I was lecturing for 90 minutes in a mask, of course that’s hard), having to sit down after teaching (but I was out of shape after covid and moving for 90 minutes can be tiring). By early November I was in the ER twice for sudden inability to breathe, low pulse ox, and no explanation after extensive workups. By mid-November I couldn’t keep my eyes open, chew or swallow, was slurring my speech, and couldn’t write on the blackboard. I self-diagnosed with myasthenia and was lucky to get a December appointment with a neurologist. Although for the last sixteen years I’ve made between six and twelve kinds of Christmas cookies, by Thanksgiving I couldn’t lift a spoon to fill a measuring cup with flour. I stayed home by myself, ordered food and made stuffing. I didn’t do the dishes for three weeks.

Right before Christmas I saw the local neurologist who agreed within five minutes I had myasthenia. She started me on Imuran and mestinon and said she didn’t really care what the blood tests showed (which was good, since they were negative). Within 30 minutes of my first mestinon my eyes went from almost completely shut to almost completely open. I was able to eat bread for the first time in weeks.

Even with mestinon I had trouble breathing, blurry vision, and couldn’t do tasks like fold laundry for more than ten minutes. I started IVIG in January. I shouldn’t have driven to the hospital that day because my vision was so bad. I hadn’t laid flat for days due to breathing problems and my pulse ox was 92% when I got there - not good since that meant my diaphragm was giving out. Within two hours I was lying flat reading my Kindle with 98% O2 and normal blood pressure for the first time in months. I got in with a top myasthenia specialist within a few months who confirmed the diagnosis and treatment plan.

It’s been a long year - I was incapacitated during the heat wave this summer. I’ve been hospitalized twice. I spend four days every three weeks getting IVIG, so it is about one third of my life. I’ve gained a lot of prednisone weight. I’m still far from where I want to be and stayed home again for Thanksgiving because my muscles and vision can’t take a drive more than 15 minutes. My local neurologist isn’t sure what’s the next best step so I’m waiting to see the neuromuscular specialist three hours away in January.

But this morning I made two kinds of cookie dough to add to the two I made last weekend. I cooked myself some turkey, stuffing, and cranberry sauce and cleaned the kitchen.

I cried several times thinking of how I couldn’t lift a spoon last year, and how hard I was on myself for not cleaning, or really doing anything but going to work and lying in bed. Even though I knew something was very very wrong and was 99% sure it was myasthenia I was so angry at myself for being lazy. I am great at soldiering through problems and so it is only now that I let myself feel.

I give quiet thanks today, to the doctors who didn’t care that I have no antibodies, who started me right away on treatments, who agree now that we need something more aggressive and are ready to figure that out. I give thanks that those first few hospital trips with unexplained breathing problems didn’t turn into unrecognized full blown crises - I know now that my low pulse ox meant I was either there and somehow they resolved, or I was on the verge. I know this story of access to doctors who believed me, and recognize their limits, is all too rare and is result of my privilege. I texted throughout the day to the friends who have been there in the past year, abiding with me and doing their own research about myasthenia so they can walk with me. I give thanks for the small flicker of joyful hope that I haven’t felt in so long, but is starting to emerge again.

Hello all,

I wanted to remind this community to not overpush yourself on this Holliday to please anyone .

Speaking from my own experience as a 26 year old man, I sometimes feel useless and bad about myself when I am unable to help lift heavy things or help around the house. Yesterday I lifted something heavy and had a minor exacerbation of symptoms.

There is no reason to feel that way. It’s not like we want to have this disease.

Explain your situation and set your boundaries . People will be understanding if they care about your well being .

I can guarantee that your loved ones would rather you put your health first than end up in the hospital in a crisis .

On that note, I know it is not easy and I know not everyone in your life will understand.

Please don’t be too hard on yourself mentally, and most of all please take care of yourself .

Have a great Holliday

I know that neurodivergence and autoimmune diseases are quite common together. Well I will start me.

Edit: Almost everyone in the comment is autistic. It’s quite a funny coincidence. Edit 2: Who is downvoting every comment?

in the uk. had a sore throat, it’s developed into a chesty cough. last few times this has turned into life-threatening crises where it was extremely amazing that i pulled through. have noticed i am getting breathless easily & i cannot clear my chest. should i go to a&e before it gets worse? can they do anything there or am i just putting myself at higher risk to catch something? should i call 111? i am so scared to go through this again…

UPDATE: was walking home & rlly struggling. got some passer-bys to call an ambulance for me, now in intensive care. on oxygen, & managing. thankfully have avoided intubation. neurology have been to see me, & there is a treatment plan in place. physio have also been & helped clear my chest, so i do feel i can breathe a little easier. my arterial blood gas was 7 upon arrival last night—thank you to everyone who commented & validated my fears—i was very worried that i was acting out of a place of anxiety rather than a genuine concern, but it’s good i went in when i did. i’m thankfully stable for now, but everyone here is well aware of my history of rapidly declining, so i’m grateful for the eye they are keeping on me. have no contact with family, so going through all this on my own…

Is there an ACHR minimum level below which meds shouldn't be prescribed? If so, are there different limits for different meds? My neurologist had me take another ACHR blood test to determine whether he'd continue me on Vyvgart. What say you all?

I live on a small island in Canada and our health care is the pits!!! I have a very aggressive form of MG with the rare antibody. My neurologist has been my doctor for almost 20 yrs now I’m 35 and seems this year my MG has taken control of my life. I had a lot of different treatments this year plasmapheresis, IVIG, rituxan, Cellcept nothing is working so my doctor is trying plasmapheresis again all this in the last 7 months, I’m looking for help maybe. MG specialist could help me better because I feel as if I’m just grasping at straws until one sticks.
Please help I have a 3 yr old that I can barely raise by myself because of this shit disease.

Seriously this medicine made me want ti delete myself because of all the muscle twitches. Prednisone is probably making my emotional state worst and I can’t be on it for life right? And for the 3rd option they ask me if I wanted children. So that’s a big no for me. I am 17, I am not deciding if I want children or not right now. So for now it’s a thymectomy. It’s my best shot. Did anyone go into full remission after their surgery? Or like a few months after? Thank you.

Recently diagnosed (ACHr positive) for ocular MG and tried mestinon 30 mg. It made a tiny difference. Then I tried the 60 mg on two different days and it really helped my eyes but then I felt so incredibly tired about 3-4 hours later and my body felt so heavy. This happened twice. Is this expected?

It's been a crazy 3 years since diagnosis, and it all started from one little vaccine I'm September 2021. 2 days later, severe covid x 30 days. Scary as hell. November 2021, diagnosis. Since then I've had a lot of medical problems and procedures. Not all are connected. Maybe? Anyway, microdiscectomy, emergency gallbladder surgery, pancreatitis, thymectomy, l5/s1 fusion, c6/c7 fused. Now prepping for reverse shoulder replacement.
Seems like all issues have worsened exponentially. Constant pain. Anyone else experiencing issues like this? The struggle is real. 56 yeat old male

Hi, I started having issues in July where I thought I was having a case of myelitis. The weird thing being that it could fluctuate in the day, depending on my activity. I could get words out, right eye droops, facial tremors and spasms, along with legs like concrete and body weakness. I was referred to Neurology in August following a Neuro assessment at the GP.

It peaked and then slowly got better, didn’t go away and still came on if I walked for 5 minutes. Weirdly it comes on after/during driving, is that typical?

I’ve been living with this and waiting for Neurology. I’m in the UK and under the NHS so it’s not coming soon. This last week it has come back with a vengeance and now shortness of breath has added itself to the party.

It is scaring me to death and my GP is seeing me next Wednesday but they refuse to give me steroids without a diagnosis and a diagnosis is not coming within the next 6 months.

Yesterday, I had to take my Mum shopping. I’m her carer as well as for my disabled teenager. During checkout, I thought I was going down. Dizziness, vertigo, weakness. I managed to drag myself to the car and sat it out. During the drive home, I had to pull over as it’s like the shortness of breath causes some kind of hyperventilation, I can’t see straight and I feel like I’m blacking out. I pull over and it passes eventually.

My son has very high care needs and I am a lone parent. I have little family support and the only person in our lives is my ex husband, his dad. He doesn’t help much at all and is currently on holiday, til Friday.

Sorry for the book! My question is, what can I do to keep this at bay? Once he is home, in an emergency, I could go to hospital but I don’t want it to get that point. Our A and E department is a war zone.

I’ve got some Huperzine A coming today. I don’t know if this is MG but I’m not finding out any time soon so treating as is, until I know better. There’s not much else I can do with health professionals.

It’s scaring me to death. Has anyone top tips to manage this? Thank you so much

Sorry for typos, new here and it’s not letting me correct

Hi,

I’m hoping someone can help? I am undiagnosed and waiting on Neurology. In the meantime, I would like to try Huperzine for symptoms relief but was wondering whether this would affect antibody levels in the blood tests?

Many thanks

Is there a discord channel for MG?

I’m 32M. A few months ago, I made a post here explaining my symptoms, but at that time, I hadn’t seen my neurologist yet. Now, after a lot of tests, I finally have a diagnosis—but I’m not completely sure it’s correct.

My symptoms have changed a bit since my last post. I have generalized weakness (every muscle I use gets tired quickly), although it’s more prominent on my right side. I also have light numbness in my arms, my right thumb feels achy and weak and, and I’m tired all the time. I wake up feeling like crap even if I sleep 10 hours. I don’t have ptosis (at least, not that I’ve noticed), and I don’t have problems swallowing or talking although my tongue feels weird. It's been 8 months since symptoms onset.

At first, my doctor told me it was very unlikely that I had MG because of my symptoms. I had a clean MRI (with and without contrast) a nerve conduction test and an EMG, which showed some radiculopathies and with that he ruled out ALS and MS. After that, I brought up MG again to my neurologist because I wanted to rule it out completely. He ordered an RNS test, which came back positive, followed by an MG panel (still waiting for the results) and a single-fiber EMG (SFEMG) two weeks later, which was also positive.

I know that a positive SFEMG is usually enough for an MG diagnosis, but I still have my doubts. I’ve talked with two other neurologists (family friends), and they think it’s a wrong diagnosis. They pointed out that with the activities I do regularly—like swimming, cycling, working out, and playing racquetball—it would be nearly impossible for me to have MG, especially without symptoms like ptosis, slurred speech, trouble breathing, or swallowing issues.

Now I’m confused and scared it could be ALS because I also have bilateral hyperreflexia (my neuro thinks it's not an issue, but still). I also have a B12 deficiency, and I’m wondering if that could explain my symptoms instead.

I started treatment yesterday, 40mg prednisone one day, and 30 the next one. I think I feel with more energy but besides that I haven't seen any improvement yet.

To clarify, the neurologist who diagnosed me is a neuromuscular specialist, and I think MG is still a possibility. But I’d really like to know if anyone else has been in a similar situation.

So I’ve been dealing with rapid muscle fatigue issues for decades but it’s been largely ignored as I have good muscle strength and it hasn’t limited me much in the last, but it’s gotten worse so I’m in the midst of trying to get a diagnosis. I have almost every MG symptom, muscle myopathies, can’t hold arms over head for long, jaw tiring when eating, esophageal dysmotility, occasional double vision that goes away when closing one eye, occasional vertigo (mostly orthostatic hypotension but also happens if I look overhead while standing), one droopy slow to respond eyelid that’s not very noticeable during the day but worsens at night, etc. However, I also have cervical spondylosis and I was negative a few years back on LabCorp’s MG screen which did not include LRP4 antibody testing. I’m trying to get Quests’s MG portfolio authorized which includes LRP4. If Quests’s portfolio turns out to be negative then the next step is likely testing for single fiber EMG.

So while I’m waiting for my insurance to authorize the next step, which they say will take weeks, I’m dealing with a bad flare up and wanted to get opinions from folks here.

6 weeks ago I was feeling relatively fine and I decided to take some small tree limbs down using a long telescoping pole with a saw blade. The repetitive back and forth sawing motion while also supporting the weight of the ~21’ pole did me in. All my muscle myopathies got exponentially worse, and here I am 6 weeks later and they still feel extremely weak, like they’re still on the verge of spasming/cramping (but they haven’t), borderline trembling, and all my other symptoms got worse as well, including my neck muscles feeling like they’re on the verge of giving out.

So with all that being said, when you guys have MG flare ups that significantly limit you in comparison to your typical normal, can they last for months? Muscle shakiness and borderline tremors from something that you did 6 weeks ago?

I’ve had just about every symptom of MG for decades but my symptoms have generally not been severe and not too limiting. My muscle strength is great, they just fatigue and weaken way too quickly. Hodgepodge testing up until this point has been inconclusive. I was seronegative in 2021 but they didn’t test for LRP4 antibodies. I’m only recently learning that almost all of my symptoms are classic MG. I never thought they could possibly all be related to just one condition.

I’m in the midst of a flare triggered by the repetitive motion of manually cutting tree limbs using a 21’ long telescoping pole with a saw blade. That was 6+ weeks ago and my arms are still weak, they feel close to spasming or cramping, they tingle (almost charley horse type tingling) and they’re still on the edge of shaking/trembling. My other symptoms have worsened also, leg weakness, neck weakness, droopy slow eye, etc.

Unfortunately, I also have cervical spondylosis and compression so there can be some overlap.

I’m trying to get pre-approval for updated antibody testing and I have an appt with a new neuro but that’s a few months away.

I understand it’s a snowflake disease but I’m curious if 30 minutes of limb cutting triggering a 6+ week flare that’s multiple orders of magnitude worse than my typical normal sounds like MG?

Hi! im currently in the process of diagnosis for either gMG, Congential Myasthenic Syndrome or LEMS and ive been doing a bit of research on treatment. im so glad theres actually effective treatment but immunosuppressants sound so scary to me. i wanted to know what your experiences with them are like and also what your experiences have been with ivig/plasma exchange as im thinking i might go that route if its a possibility.

my dream job has been to be a tattoo artist for a while so like being on immunosuppressants would mean i couldnt do that and as a physically disabled AuDHD artist theres not much else i would be able to do

while im at it also other question ive been getting more and more of the no breathing episodes and its not only scary but its also starting to affect my cognitive abilities and im scared theyre lost forever, anyone who had myasthenic episode induced hypoxia pls idk what to do

edit: just to clarify im waiting for AChR results, ive had a positive EMG 2.5 weeks ago and neurologist has confirmed the presence of some type of myasthenic condition and said we just have to wait for my blood test results bc shes not sure if its CMS, MG or LEMS. Were only testing AChR rn because they dont test for the other antibodies/genes where i live so we would have to send my blood to be tested at the opposite end of my country which is complicated and expensive