I get so weak and my brain fog is bad too. I struggle to walk aswell. I’m bedbound in the process of being diagnosed and it typically gets better mid day after more rest.

I had a false positive blood test for AChR Binding Abs, Serum apparently first time they tested it came back

1.48 nmol/L

With normal ranges being 0.00 - 0.24 nmol/L

Following that I had a Ct and Mri that both suggest I had hyperplasia in my thymus

I believe that he had begun to discuss the possibility of me needing my thymus removed

So natural I went to get a second opinion from a head of her department Nerulogist that was convinced I didn’t have myasthenia Gravis based on pyshical exam and then another AChr Binding Abs, Serum test that came back significantly lower 0.03nmol/L and fell into normal range

When I went back to my primary Neurologist he was was shocked and chuckled a bit and said well look at that

I asked him if he thought it meant I had myasthenia Gravis he said no he doesn’t believe so anymore

I asked him if he thought anymore test were necessary to rule out myasthenia Gravis he said no

My only concern is from the MRI suggesting enlarged thymus does that still mean something?

Some important additional information I would like to bring up is that the blood lab at the building I go to is very unprofessional often rude and sloppy so wouldn’t surprise me if they some how messed something up I’ve been there many times and have had many bad experiences from them

I would also like to say I like my Neurologist logist I think he’s a good guy I think he’s just a bit over his head with this

Reason being is I’m young 24m so I’m automatically disregarding as having Extreme aneixty and was sent to see a psychiatrist who put me on anti depressants for like a year. After having many tests I was finally told they found I have Hashimoto induced by IGG4 which can be responsible for an enormous amount of symptoms including serve Anxiety, depression, Brain fog and bad memory. This being the symptoms that i had been trying to get answer to for the last 3 years as to why I felt so horrible. But I wasn’t surprise they thought I had myasthenia Gravis I was having rapid fatigue muscle cramps Badly in my chest and arms when working out and legs feeling swollen after lifting with them and a slight choking feeling at times that would improve after I ate something. As well as derealization/depersonalization.

Im just still a bit confused by what just happened and if I should still be concerned about myasthenia Gravis or if I should turn my attention and focus towards this IGG4 illness as I still don’t know the extent of damage it has caused on my body I’m seeing a rheumatologist at the end of the month but the wait is torture. Hoping all is well and that my organ having been damage badly by having to wait to get treatment because I was bounced around from doctor to doctor who had no idea what they were doing and showed no sense of urgency

Thank you apologizes from poor grammar

Hope you all are doing well. As well

Does anybody’s teeth get sore after they’ve taken prednisone? Every time I have to increase my dose/make a change my teeth start to hurt.

Hello! Any MG mamas have a good doctor in Arizona you recommend? First pregnancy, super nervous, already feeling fatigued.

I’m curious to see if anyone is playing sports with MG

I have the opportunity to play college basketball at 23 but I first got symptoms at 18 . When I stopped playing and stop doing school . So I haven’t been really active until recent.

I’ve been exercising a lot this year even after my surgery , I’ve been able to play basketball multiple games with no issue decent cardio etc

Only issue is the variability of symptoms . Last month I began to squat with weights and it absolutely wrecked me for like a month. I didn’t go back to the gym.

So it’s like my body has the capability and then randomly just can’t .

I’m curious to see if people can exercise at a high-level with MG and how they manage it

Hi all, I’ve been prescribed Mestinon 60mg. I am having trouble finding it in NYC. No Walgreens seems to have it and my local pharmacy doesn’t either. Any advice?

Saw my neuro yesterday. Between our last meeting one month ago when I was first diagnosed I have been admitted to the hospital twice for 4-5 days each with potential crisis (slurring, rapidly falling NIF, trouble breathing, inability to walk more than a few feet stemming from a respiratory virus). last week they sent me straight to ICU totally prepared to intubate but I pulled through overnight on room air and I stayed for 3 days of observation. They would not do PLEX because I was able to breathe on room air and my NIF was 30 even though I felt like death.

So now my neuro said insurance won't cover IVIG unless I fail the medication I'm on now and then upped the dose of everything. Prednisone to 30, going up 5 every week, Pyridostigmine to 90 3x/day and add a 4th dose if I need it but he's thinking about trying 120 if that doesn't work, Mycophenolate to 750 2x day and adding Mepron liquid antibiotic to prevent bacterial pneumonia along with vitamin D and B complex. Mepron is being used due to a Sulfa allergy I have that prevents me from taking more common antibiotics.

I'm really concerned about going to the hospital and getting admitted again. So tired of getting PICC lines and painful blood thinner shots and so many blood draws and scarring my arms. I wake up with enough energy to move around, make tea, make my bed etc then I need to lay down for several hours and need to use a cane or walker to move around the house. Using my phone in bed for too long will eventually make my arms shake from fatigue. Yesterday even with the walker all I did was walk out of my house to a car, take an elevator, walk down a tiny hallway to the neuro and my legs were beginning to give out. My entire body felt like jello, I had a headache and felt like I was dissociating out of my body and I even took my medicine before leaving but it didn't seem to work fast enough. During dinner my mouth and jaw got too tired to chew a burrito by the end of my meal and that's been happening at least once a day now. I can't talk for long because my mouth gets tired, freezes up and I lose my voice whereas even a few months ago I could prattle away all day.

When the Pyridostigmine kicks in I have enough energy to sit upright at the computer for an hour or two and stand for like 5-10 minutes then I get fatigued from sitting upright. Sat in a chair while my sister braided my hair for an hour the other evening and I was totally wiped out even taking breaks. Neuro says I'm still recovering from the cold but idk if I should seek another neuro or try to call my insurance and appeal to the the IVIG because I really want to try something else.

Okay, so.. undiagnosed. Got desperate. Now just more lost and losing the will to even bother with further testing.

Paid out of pocket for a neuromuscular consult with a (virtual) concierge clinic. Very reputable and I looked into her in depth. Despite being virtual she did a handful of tests and has very little doubt it's MG (maaaybe a myositis). She also suspects I'm nearing Myasthenia crisis. Normally they coordinate with local doctors but she felt I needed to be seen immediately and urged me to go to Mayo clinic emergency department (it's about 1.5 hrs away so not ideal).

Mayo clinic ran the following tests:

• Troponin T, Baseline, 5th Gen
• Prothrombin Time (PT)
• NT-Pro B-Type Natriuretic Peptide (BNP)
• Patient Status
• DX Chest Anterior Posterior or Posterior Anterior and Lateral 2 Views
• ECG
• Troponin T, 2h/6h, 5th Gen

-Complete Blood Count (CBC) with Differential, Blood

• Basic Metabolic Panel
• Blood Gas without Coox, Venous
• Troponin T, Baseline, 5th Gen (repeated)

They were extremely skeptical of the diagnosis and said the labs don't support Myasthenia. They proposed no alternative explanation to my symptoms but referred me to the long COVID clinic and asked if I needed psychiatric help (more like insinuated). 🙄 Of course I'm crying I'm losing the ability to walk and BREATHE!!! I was not remotely hysterical or disrespectful.

I'm supposed to do a shit ton more labs and tests now (MG specific, none of which have been done yet) when I meet with my local general neurologist in 6 weeks. It just seems pointless.

I guess I'm wondering if anyone else has been in this position? It seems crazy that Mayo Clinic could be wrong.

Neuromuscular notes from today "symptoms are most consistent with neuromuscular junction dysfunction versus a myopathic process. She has weakness in proximal muscles, diplopia, worsening over the day, shortness of breath with exertion, and improvement with cold."

I am pretty much symptoms free II am on Vyvgart and I take prednisone since March after having a flare cleaning up my yard In have not had any major symptoms but I have gained so much weight being on prednisone and being sedimentary. I had thymoma removed and I don't know if my breathing problems are because of damage to my diaphragm during surgery or because I am just over weight or just due to me having a large thymoma siting on my left lung for over a year. But if I walk more than a block Im winded and feel like I'm going to pass out Inhsve had pulmonary exam and they came back about normal I have a rescue inhaler but it does nothing to help with my breathing I just have to stick it out and usually my breathing goes back to normal after a few hours but for the rest of the day I'm winded and my breathing is just bad all day.

I also have some issues with pain but they see no damage from falls I have had in the past on days when I was weak before they started to look into this my legs would be super heavy or my feet wouldn't lift and I would trip and fall I have fallen down my basement stairs twice and they never seem to find anything wrong with my back on MRI but I have terrible back pain and it's so bad that if I forget to take my muscle relaxer or my hydrocodone I can't sleep at night. I have to use my walker to go everywhere and I avoid going outside. I want to work but my back problems prevent me from standing a long time or moving around my DVR people don't understand the help I need and social security has denied me twice. I don't have any skills and that don't require physical labor and I just feel so freaking loss like if it's not one thing it's another.

Update: what a turn of events. Went to the ER to have metabolic acidosis I developed from my asthma exacerbation corrected as the nausea from it prevented me from keeping down the bicarb tablets I was prescribed to correct it. Turns out I am also in myasthenic crisis so am in the ICU, have been started on IVIG, and am on BiPAP with a low a threshold for intubation. Also somehow the acidosis has shifted to alkalosis but they’re less concerned about that. This is the same hospital system but a different campus than I was at a month ago. I am certain the positive LRP4 is why they’re taking me seriously.

You might remember my posts from about a month ago. Started huperzine A after recommendation from people here - noticed instant improvement. Stopped working enough and ended up briefly intubated in the neuro ICU with suspected myasthenic crisis. They drew LRP4 and titin antibodies then.

That hospital stay was frustrating as apparently I didn’t have a “typical MG presentation” and they tried to say I had FND, then changed it to long Covid vs FND. The FND tentative diagnosis in my chart haunted me over the weekend when I was admitted overnight at a different local hospital system for an asthma exacerbation (happens when I get sick, I had a random upper respiratory virus that I’m over now). The pulmonologist declared I was not in an asthma exacerbation without listening to my lungs and my difficulty breathing was all due to my alleged FND. I was struggling to breathe from my asthma and also from my diaphragm being weak. The RT did do a NIF test on me and it was -25 but the night doctor refused to put in any orders even though the RT was concerned with my intubation history and thought I at least needed BiPAP.

It hasn’t hit me yet that I am LRP4 positive. I was starting to doubt myself even though my symptoms are getting worse. Now I’m just mad at how I have been treated by all the specialists and a bit worried they still won’t take me seriously even with this positive LRP4 result.

Thank you for all your support - wouldn’t have known what to look for without you.

Does anyone here know?

I’m noticing symptoms more now on my face is much more numb and neck is a weak

After my surgery I feel like I regained a lot more control over my weak muscles But over the past few days my face feels super heavy , no visible change yet. I looked normal most days. But it feels like I’m losing control of my face.

Even the muscles I use to drink well it’s super fatigued. To the point where I didn’t even know that there are muscles involved in the jaw with drinking.

And I’m not sure what to do to prevent it Because going to the hospital or urgent care, they might not take me seriously

1 hour ago had a SFEMG and RNS, both were normal despite being symptomatic. Would love your opinions on my situation. AcHR antibodies normal (I have 0.4nmol/L - and 0.5nmol/L is positive.) I respond positively to the Ice pack test. I need Mestinon every 3.25 hours, without it I have ptosis, double vision (binocular vision dysfunction diagnosis requiring prism), face droop, hemiparesis and full body lack of endurance and weakness, food just sits in my throat when I swallow, diaphragm weakness, shortened breath count test. I am having an ‘autoimmune response’ according to my rheumatologist, positive ANA and Lupus Anticoagulant antibodies.

The neuromuscular specialist who did the test, who said he treats 100 people with MG, said my response to the ice pack test and Mestinon were placebo. He said I don’t have a neuromuscular disease. I asked for a differential. Then he said functional. I asked for another and he basically rolled his eyes. He said my ptosis wasn’t typical for MG. I said in what way and he wouldn’t answer. I asked if ME/CFS could explain this, he said it wasn’t a neurological disease. I said the WHO said it was since 1969, he disagreed. I asked what it was and he said ‘something else’. I said do these electromyography tests rule out MG, he said the whole picture does. I said do these tests specifically and he wouldn’t answer. I asked why Mestinon works and he said dysautonomia, I asked if that explained my ptosis and he said no. I said in most everyone aren’t these antibodies zero, he said they were ‘falsely elevated’ in people with ‘autoimmunity’. I asked what would help MG, he said immunosuppressants. I said prednisone they gave me for “Bell’s palsy” significantly improved my MG-like symptoms. He said that doesn’t rule in MG either. ???

I have a complex situation (EDS, MCAS, Dysautonomia, ME, craniocervical junction deformities and neuralgia, migraine, hypogammaglobulinemia, severe infections, autoimmunity, GI dysfunction SIBO IBS, hypertensive dystonic crisis, Bipolar and neurodivergence, inflammation (CRP, bursitis, costochondritis, tendinitis, etc etc.) Well over 100 abnormal blood work results. For some reason Mestinon seems to work for weakness in this profile according to Ilene Ruhoy, a specialist in people like me. He seemed skeptical of ‘all my numerous diagnosis’. Anyone with a similar profile?

I don’t care if it’s functional, I just don’t think it is.

I said meds don’t work for functional issues, he didn’t have a response. I said placebo response is notoriously inconsistent and Mestinon and Prednisone and Ice pack test are always consistent and he had no response. I have woken up with these symptoms in the night after eating gluten. I got way worse after Covid and every infection. I have been tapering off of Lithium, Propranolol, Magnesium, all of which can worsen MG and have less acute flares except with select foods, forgoing Mestinon, and especially even mild overexertion.

My main question is can you have MG with negative electromyography and antibodies like this? Has anyone been diagnosed like this?

I do NOT believe Mestinon is placebo. It is 100% consistently helping and when I forget to take it I can tell. It has greatly improved my life. It definitely helps my dysautonomia, but these aren’t dysautonomia symptoms. He said I can keep taking it if it makes me ‘feel better’. He was patronizing but I kept my cool. I asked for other specialists for a second opinion and he gave me their names.

What do you think? Please let me know. Should I give up on MG or is he full of shit?

Honestly, Neurologists suck in my experience.

For some reason I have been feeling like shit lately, today I have been in bed most of the day, not even able to scroll social media.

I am trying to understand why. I started Mestinon a few weeks ago, so I have been more active than I used to be. Could Mestinon make me worse, because I can do more when I take it?

I had to wait two days for my script to be filled, and I have been even worse than before starting it.

I've been struggling with double vision for a while now, and it's really affecting my daily life. My doctor suspected ocular myasthenia gravis, but my test came back negative. Despite the negative result, I've been on 60 mg of prednisone for the past two months and taking 3 pills of Mestinon daily. Even with the treatment, I still have double vision, and it's my only significant symptom.

Has anyone else experienced something similar? Can it still be ocular myasthenia gravis, or should I be looking into other potential causes? I would really appreciate your insights.

TLDR: Not officially diagnosed, can't take a deep breath, trouble swallowing at times, arms have been super heavy and weak the last 2 days. Should I go to the ER and tell them I am suspected of having MG?

I'm waiting on an official diagnosis. It's been 3 weeks since my bloodwork was sent out, but nothing back yet. Last summer I went to the ER 3 times for shortness of breath and weakness and was dismissed. Started having ptosis and double vision in both eyes a month ago so I saw my opthalmologist. He started asking me about muscle weakness and breathing trouble and ordered an MG panel.

Last 2 days my arms have become incredibly weak and heavy. It's harder to swallow and I can't take a deep breath. I'm barely speaking above a whisper. I'm scared, but I'm also afraid of being dismissed. Should I drive 45 minutes to a big university hospital?

Hello. Was hoping for any guidance from you all as I navigate an MG evaluation. I’ve been noticing rapid fatiguing of specific muscle groups since ~2020. I tested negative for ACh binding and MuSK antibodies in 2022. I saw a neurologist for evaluation recently and they mentioned that there are 4 enzymes that can be tested and I was only tested for 2; they said they won’t bother with the other two (I’m not sure what they were) but added a CK blood test as well as SFEMG.

I understand that there can be seronegative MG (and that it’s much less common) and that SFEMG is a confirmatory type of test. I’m relieved they ordered SFEMG but also wondering why not the other blood tests, given that they’re less invasive. What other blood tests can I ask to be tested for? I’m confused about the different types of ACh antibodies (binding, modulating, etc?). I’ve also seen LRP4 and agrin mentioned here and in the literature as possible antibodies for double-seronegative MG patients. Are those tests I should ask for?

I have other medical diagnoses (lupus (SLE), Hashimoto’s) for which I am on treatment for and are relatively “controlled”, but I’ve been asking docs about a number of lingering/outlying symptoms that have raised flags for MG. Parsing out the lupus fatigue from any other thing that could be going on is hard to figure out. At different times, my PCP has brought up me/cfs and POTS as possible causes of my lingering symptoms. These haven’t been fully explored yet. I could make a very long post about my specific symptoms that could be MG, but in short they are: -quick-fatiguing muscles in tongue, jaw, and upper arms, and neck. If I rest for a matter of minutes I can use muscles again. -shortness of breath and/or trouble catching breath after exertion/lifting/leaning down. Also resolves with minutes of rest (but is quite terrifying in retrospect). I am not having anxiety attacks or hyperventilating because I’m concerned in the moments, I just literally can’t seem to get my chest to allow air into my lungs. Happens really suddenly. -trouble swallowing (food sticks in throat) -no eye droop or facial muscle issues that I’m aware of besides the jaw tiring
-trouble exerting voice at end of day. Voice gets graveley sounding and it feels so hard to talk at my normal voice level/quality. Whispering is much easier.

At this juncture just want cover the bases for any possible tests I could be asking for to assess for/rule out MG. Thank you!

Hey everyone,

I am seeing an ophthalmologist tomorrow and hoping he will be able to refer me to a good general neurologist here in British Columbia (preferably metro Vancouver) who can help me get officially diagnosed. Or I can go over into Washington state/Seattle if it comes to that. A few years ago I went through MRI’s and EMGs at MS clinic to rule out MS and some other movement disorders. Dr there reluctantly sent me for achr and anti-musk. Achr was too low to be ruled positive and then anti-musk came back negative. Sent for SFEMG at VCH - which was done in freezing cold room and with resident trainees (absolutely the worst experience - dr diminished my symptoms, essentially telling me it was all in my head). Fast forward a few years later while symptoms continue to gradually worsen and are more prominent. I was in a couple of weeks ago to see my optometrist for my 2 year checkup/new glasses and complained about my intermittent blurred vision, eye twitching - especially in the evening or when I am tired. Briefly told him about my other symptoms (fatigue, muscle weakness, slight eyelid droop on right side, trouble swallowing, trouble going up stairs, etc). He said there is nothing that he can see that is wrong with my eyes, gave me referral to ophthalmologist (seeing tomorrow). And said my symptoms are definitely sounding like they are neurological (uh, yes…I know that - but I have such medical trauma from seeing all these neurologists a few years ago and them just diagnosing me with functional neurological disorder…basically dismissing me…so I pretty much gave up trying to get diagnosed until now again). Now, after revisiting what testing I had done a few years ago - I realize that the SFEMG should have been done in warm room, you should warm, etc (I had it done on cold day, room was freezing and I was literally shivering because I was soo cold!). I also did not realize there were different forms of MG, including seronegative. Soo….if anyone with seronegative MG in British Columbia (or Seattle) that was diagnosed by a decent, caring doctor that you wouldn’t mind sharing their name - I would be very appreciative. I have read that the neuro-immunology drs at the big teaching hospitals (like Seattle) are not too helpful in diagnosing seronegative (probably because they need you to be achr or musk positive for enrolling in studies).

Can't declare I'm in remission as I'm still on Mestionon and Prednisone but on very low doses compared to the past. Gonna confess, I'm soaking in this phase. I am aware I can flip back, I even have some anxiety about that, came down with pneumonia in early April but skated thru that ok.

Life is good :-)

Still a few minor Cushings disease issues but even those are largely gone as I'm down about 85% from peak dose on the Prednisone.

Like many if you I used to dread/fear stairs, now I walk 15 flights a day (because I can!).

Wishing all of you still struggling some brighter days to come. In the beautiful words of a poet... Live long and prosper.

Has anyone gone to the health fairs out on by the MGFA Foundation? I was thinking about going to one but I don’t know what do expect?

Has anyone been diagnosed with both? I’ve read there is a correlation and since weaning down off my steroids I’ve started getting significant fasciculations in most parts of my body that also seem to worsen with activity and improve with rest 🤦‍♀️🤷🏻‍♀️

Of course this has also sent me into an ALS spiral, (although they appear to be episodic with activity rather than progressive) and i don’t see my neuro for another month.

I suppose I’m looking for any real world examples of cross over between the two conditions.

TIA ☺️

Hi all! I’ve started Rystiggo on May 1st. Today is May 3rd and I have a severe headache that whatever I take it will not take the headache away. It literally feels like someone is beating me in the back of my head repeatedly non stop with a hammer. I am freezing cold and have the chills. Though I know these are side effects, I was wondering if anyone else is on the rystiggo infusion and if so do they have these side effects or any at all??

I think my best bet is to stop the medication and get back on vyvgart where I had none of these issues.

Hello,

I am debating moving to another state or not. I am on Prednisone, IVIG, and imuran .

The only thing holding me back is I am worried that I won’t find a neurologist that will prescribe the same treatments or they will refuse to treat me all together bc I know how neurologists can be. on top of that it takes 3 months to get into see most neurologists anyways

So basically the predicament I’m in is I want to move to a different state this summer but I do not want to sacrifice my health and treatment in any way .

If anyone has any advice on the best way I could transfer doctors and continue on my treatment please let me know.

does anyone know of a good neurologist that will see someone within weeks rather than months in the Bay Area with medi cal partnership health plan and a doctors referral? Scheduled an appointment for UCSF neurology in September but have been in MG exacerbation for weeks now and need an urgent neurologist referral instead. I am desperate crying every single day and afraid of death. I have never felt so close to the edge