r/MyastheniaGravis

Yesterday, I had very bad diarrhea after taking Mestinon. I’ve been taking Mestinon for months now. At first, I did have diarrhea as a side effect, but it was just a slight discomfort. Yesterday, I got diarrhea about 2.5 hours after taking Mestinon. It was very severe, with a lot of abdominal pain and watery stool. I don’t know if it was caused by the Mestinon or if I just ate something bad. Can Mestinon suddenly cause severe diarrhea even if I haven’t experienced it before?

Edit: Does the diarrhea stop when the mestinon loses its effect (4 hours)?

My mom is suffering through myasthenia gravis , she is 40.is this disease actually completely curable . Can it lead to death .

Hi all,

Looking for a little help, as I’m at the end of my tether and completely lost.

In February of this year, I developed extreme dry eye and a few weeks later I noticed I couldn’t keep my eyelids shut. I can blink normally, have no obvious ptosis but when I close my eyes, after 5-6 seconds they will slowly start to drift fully open again. I can squeeze my eyes shut tightly, but the muscles fatigue after 30 seconds and my eyes drift open.

This has meant that for 6 months, I’ve had to use surgical tape to close my eyes at night. Both an ophthalmologist and a neurologist are stumped and can’t explain it.

The neurologist is leaning towards MG due to suspected orbicularis** **oculi fatigue. I have no issues making facial expressions etc. And I don’t present any of the gold-standard MG symptoms.

Has anybody here any experience with this odd symptom? Or could possibly suggest absolutely any input at all? Any guidance is much appreciated.

hi!

its been a min since ive written on here. the last time I asked for some exercise advice which def helped motivate me a bit more!

this time I'd like to share, Im getting a thymectomy in October! my emotions are a little all over the place. Im excited, nervous, and. a little scared. not for the surgery itself but ive never had surgery, never been under anesthesia..

anyone have any tips or experiences. how was the feeling after pr what'd you have to watch out for?

thank you to everyone have a great day! ☺️

I was recently diagnosed with double-seronegative generalized myasthenia gravis. I have significant ptosis and muscle weakness that my neurologist appreciates on exam. I’ve been trying to work my way out of this disease without jumping into treatment, but my neurologist is strongly urging me to proceed with IVIG.

She initially felt that neither RNS nor SFEMG was necessary to support her clinical diagnosis, but I pushed to have the testing done. My RNS was negative, which has left me even more confused. She actually seemed surprised by the negative result. She is still comfortable with the clinical diagnosis and wants to proceed with IVIG, but is holding off on Rituximab until I have an SFEMG.

So…tomorrow is IVIG day.😭

I struggle with anxiety in general, and I’ve read quite a few stories about adverse effects from IVIG. I know everyone responds differently, so I’m hoping to hear some positive experiences and practical tips that might help me get through my first treatment without scaring myself to death beforehand.

I already asked them to run it as slowly as possible. Unfortunately, I wasn’t told that IVIG could potentially be spread over more than two days, and by the time I learned that, they didn’t have another appointment available for a month. So I’m stuck with 2 consecutive days, and because it’s being done on a weekend, the infusion center’s hours also limit how long they can run it.

My dose/rate

I’m 5'½" and 100 lbs.

I’ll be receiving a total of 90 g over 2 days — 45 g each day of Gammagard Liquid 10%.

Here are the infusion orders for each 45 g dose:

“Your original infusion rate based on your height/weight (155 cm/45.4 kg) would have been Total Estimated Time: 192 minutes (3.2 hours).

Your current infusion rate has been extended to Total Estimated Time: 324 minutes (5.4 hours). This is a safe rate, it is very slow.

Begin infusion at 23.6 mL/hour for 11.8 mL (VTBI) over 30 minutes.

Then increase to 47.2 mL/hour for 23.6 mL (VTBI) over 30 minutes.

Then increase to 94.4 mL/hour until bag empty (414.6 mL VTBI).”

My premedications will be:

• Tylenol 650 mg
• Benadryl 50 mg IV push

My partner is going to sit with me because I’m very sensitive to Benadryl and will probably be pretty sleepy/slow. She’s also going to help make sure they don’t accidentally speed up the infusion. 😅

I’ve been drinking a LOT of fluids and have been adding one Liquid I.V. per day. I packed a blanket, pillow, salty snacks and my phone charger, and I bought one of those migraine caps in case I develop a headache.

A few things I’m particularly nervous about:

• I’m prone to headaches and migraines with aura.
• I have pulsatile tinnitus, and I’m worried that IVIG might make it more noticeable.
• I tend to have low blood pressure.
• I’m not sure how frequently my vitals will be monitored during the infusion.
• I’m obviously anxious about the possibility of a severe headache, nausea, or other infusion reaction.

I’ll be receiving the IVIG at a Kaiser Northern California hospital, if that makes any difference.

For those of you with MG who have had IVIG:

1. Did you have a relatively easy first experience?
2. What helped prevent or minimize headaches and other side effects?
3. Did going slower make a noticeable difference?
4. Is there anything you wish you had known before your first infusion?
5. Does 90 g total over 2 days (45 g/day) sound like a typical MG loading dose for someone around 100 lbs?
6. Did anyone experience worsening tinnitus or other unusual neurological symptoms afterward?
7. Were your blood pressure and other vitals monitored throughout the infusion?

I know I can’t predict how my body will respond, but I think hearing some “I had IVIG and it was totally fine”stories would really help calm me down tonight.

Thanks in advance to anyone willing to share their experience. I’m trying very hard not to go into this expecting the worst.

Hello all. This past week, my son's rheumatologist suggested we look into MG as a potential diagnosis for the symptoms that have been plaguing him for almost 2 years now. He is only 5, but some days he can't play or eat for very long and just needs to rest. He tells us he's tired or his body is tired. When he rests, he doesn't sleep and he just lays and then gets up after a while and goes about his day. (Usually needing to rest again after a bit.) Today we went to a park (its 77* F) and he gently played for about 15 minutes before sitting in the shade and tearing up about not being able to play when he still wanted to. He rested a few more times throughout playing. This is not uncommon; he rests every time we go to the park. He asks us to carry him a lot. Some days he seems fine, just low energy. Some days he can't finish breakfast because he's "too tired of eating". He gets extremely winded/shuddering breaths with walks and will cover his mouth and says it "helps him feel better" (what does that mean!). His fatigue is so severe and it's the reason we've sought answers. It's noticeable, and not just by us. His pediatrician is stumped. His CBC is normal. He had a positive ANA. He gags a lot on foods, can't chew meat unless it's a nugget, throws up randomly first thing in the morning, and has those breathing issues I mentioned. I am asking because I need some sort of direction, this has taken months and months of waiting. He has a sleep study scheduled, but they couldn't get him in until February. Any opinions/direction/help is greatly appreciated. He's been through so many blood tests and doctors' appointments already.

I’ve started it recently for blood sugar and weight control because steroids have made those things an issue. I am wondering whether it’s slowing everything down too much gut motility wise, including possibly not helping my throat weakness? I have oesophageal motility issues too with my Myasthenia, and it feels as though everything sits in my chest for a long time after eating sometimes. I guess yeah, I’m just wondering if this pill is making it a bit worse. I’d love to hear your experiences of this too?

Myasthenia gravis cause breathing symptoms

So is it a respiratory problem as if you go to the pneumologist you will find something wrong in RFT or is it just tightness and nothing shows up ?

What total body nerve/muscle disorder do I have? (affects left side only)

https://ibb.co/pjB4NBmw
https://ibb.co/1YMTpvbC
https://ibb.co/hJ2Vvpyh

What disorder do I have?

I was born with a genetic nerve/muscle disorder I believe. 

Symptoms

I believe it affects the entire left side of my body.
Reduced muscle tone and reduced nerves.

100% have a lazy eye on the left (surgical scar from operation when baby to tighten drooping eye lid caused by lack of nerves?? unsure exactly) … the same side i think also has muscle/nerve issues. 

Left side of face has diminished muscle tone. Looks rather droopy. 

Left bicep has diminished muscle tone. (I have been bodybuilding for 1.5 decades YET the left bicep STILL looks vastly different than the right … subtle difference but a trained eye can tell. I have been doing single arm bicep curls for 15 years allowing the weaker left side dictate the rep scheme. STILL does not look like right.) 

I can also see the difference between my left and right side of back muscles. 

Deviated septum. Left side AGAIN. See photo to see left nostril is asymmetrical. This is confirmed as i went to ENT and they said i have deviated septum. Little confused though as i seem to be able to breathe easier in left nostril (not entirely sure though). 

Difficulty speaking (left side of vocal cords are diminished). This leads to stuttering and tripping up on words sometimes. 

Clumsiness. Left hand has reduced control due to less nerves.

Nerve pain in left side of body. Very subtle fire like pain. 

Stomach issue. Nerves are involved with stomach and i have stomach problems so i believe this is the cause. Could be two separate disorders. 

In times of stress I have woken with morning sickness and thrown up and have a sharp pain in stomach. 

It’s possible the disorder is not even discovered yet as it’s very subtle. 

Note: I am NOT asking if I have a disorder. I have eyes. If you CANNOT discern the asymmetry DO NOT RESPOND. I am asking WHAT disorder is it. Last time i posted a singular nurse said I was normal 🙄. 

Possibilities
\\- Some kind of left only palsy 
\\- hemiparesis (but is present since birth and affects all siblings) 

Don’t dismiss this. It’s real. If it’s not discovered yet maybe go figure out what the hell it is and put ur name on it (even though it should REALLY be my name because u only sought out the answer cu of this reddit post lol)

It leads to MANY outcomes that lower quality of life

Lazy eye

Asymmetrical face, ie one side is vastly more uglier due to reduce muscle tone 

Difficulty speaking/swallowing 

Nerve pain in left 

Possible stomach disorder (would make sense as nerves are related to pretty much everything in the body) 

Possibly related to autism (once again would make sense as its a total body nerve disorder)

Things that 100% do not matter but the stupid automod requires: 
26, 5’11”, 147lb, Male, Since birth, Located in Massachusetts, 26M

Hear me out, I don’t always sleep well and I forgot to put in my mouth guard so I’ve been chewing down on my teeth all night and woken up with eyes near enough closed. Does this happen to anyone else?

I’m going away and all I can really find is stuff for insulin. I won’t have access to a freezer while I’m away.

Hey all,

I wanted to share about my dad’s journey for anyone that may be searching for an answer on this community like I was. Around 7 weeks ago my dad suddenly couldn’t swallow and his speech was slurred. He went to lunch with friends and said his food was “falling out of his mouth”. The next day my mom and dad went to the ER, they live in a rural area, so the only Neurologists were on FaceTime. After MRI’s they saw a small spot in the brain stem. The radiologist noted this to be an artifact. They “saw” several neurologists over the course of a few days on FaceTime - 1 said stroke, 1 said he didn’t think stroke and 1 said hey suspected MG. He was discharged as a stroke patient. During that time his swallowing was still very poor and speech was good and bad and then good again. 2 weeks later he choked severely on medicine and ended up in the ER at another town with a larger hospital. They repeated an MRI and the in-person neurologist still wasn’t sure what the cause was. The choking incident created worse swallowing problems, even saliva couldn’t be swallowed. We noticed the right side of his lips weren’t functioning - this is the “broken smile”. He ended up receiving a feeding tube and hasn’t had any food or water by mouth since. After discharge he began speech therapy and saw an outpatient neurologist. He said he sees strokes every day and this wasn’t a stroke. He ordered the proper blood tests for MG and all levels were high. It’s been a long road, and we know the fear of ALS and other diseases. The biggest suggestion I would give if you’re facing this with family, or yourself, is to push for the blood test ASAP. I know there are cases where antibodies are not present but the waiting is really harmful to family. I wish you all well and hopefully my dad is on the way to find some relief.

(F20) hey, for almost a year now ive been going through health issues that almost drove me crazy. it started when they gave me braces (i had really big gaps between my teeth, that plays a role in thinking it might be causing the later issues), my voice started to sound really nasally, i begin to notice it and became supper aware and anxious about public speaking. half a year after my treatment, i decided to get my wisdom tooth pulled out since it was impacted! i thought that was the fix to all my problems, since shortly after the surgery, my voice was fine again and i could speak perfectly. thats when i noticed an issue with my right eye, it started drooping for no reason, mostly when drinking or during periods where i got extremely tired - my eyes became more sore in general. after two weeks from the surgery, my voice got weird again. i felt crazy, because sometimes i would wake up just fine but other days, i couldnt pronounce more than ten words without a really noticeable lisp. i was suspicious of braces and the big change in my mouth overlay causing me that, but when they took them out, the issues stayed. as i said, it was hard to grasp what was happening, since the talking issues would just appear for a week or not at all. earlier this summer , i had a really bad experience in water where my arm and neck muscles gave out really easily, making me unable to move at all. i noticed the problem with speaking was the worst right in this moment (tongue felt really big in my mouth, paralyze), or at moments where im exposed to stress or super super hot weather. Just a few days ago i came across myasthenia and felt the most relieved in my life, that i couldve found a condition that would fit perfectly and that there could be some help for me. Im only yet to see a neurologist, but i wanted to put my issues up here to maybe help some people in the future, or for someone to tell me im not just imagining stuff haha!!!!

My husband caught a cold and I'm wondering what vitamins I can take to help boost my immune system temporarily. All the vitamin c and zinc has magnesium in it.

He's wearing a mask if we need to be in the car together and we're sleeping separately till the worst passes.

My last sore throat sent me to the hospital so I'm paranoid about it.

Took my first two doses today and I don’t think it went well. Advice?

I was prescribed 60mg.

First dose was okay, felt decent but had some pretty rough cramps.

Second dose, nausea, weakness, fatigue, feeling heavy and tired, just icky overall.

It has been at least 2-3 hours since that second dose worse off and I still feel horrible, that shouldn’t be possible right? I have a monster headache, still nauseated, shoulder and neck pain. What gives…

Thinking maybe I should have tapered into these doses.

Anyone else just jump right in or were you eased in? Calling my doctor tomorrow to talk about the meds.

Turns out I have a nasty infection, probably didn’t have anything to do with the meds.

Hi yall, I posted yesterday that I suspect that I have MG. I was on a prednisone taper for an asthma flare up, and I think it's caused whatever is wrong with me to get worse. Basically, I'm feeling very weak specifically in my arms and shoulders in the afternoon and into the evening. I have an appointment scheduled with an ophthalmologist on the 10th and a primary care appointment in a month or so.

What can I do to take care of myself in the meantime? It's *really* disabling at this point.

Anyone with experience with low dose RTX infusion for OMG here? Thx

Hi MG folks, I am in need of a sfEMG for suspected MG. My neurologist office is asking me to find out where to get it done myself. Before I call the main hospital number for every academic neurology department in the state, has anybody gotten an sfEMG in the state of Ohio? If so, would you mind telling me where you got it done and with whom?

Thank you so much for any info you all might have!

Turns out I have a bad infection and my “side effects” were probably not related to taking the meds at all. So now I am on a powerful antibiotic, it was fun trying to figure out what I could actually take.

Now I just need to decide if I am going to wait until the antibiotics are done or risk two new meds and the same time. Seems risky. I am also nursing an injury so kinda on edge about if this is going to cause a flare or worse.

🤞🏻🤞🏻🤞🏻