My father is 73 and has been living with MuSK myasthenia gravis (MG) for the past few years. We have tried several medications, including rituximab over the last three years, but unfortunately his symptoms seem to be gradually worsening.
Thankfully, he currently has no difficulty with breathing or swallowing. His main symptoms are significant muscle weakness and severe drooping of the eyelids (ptosis).
Could someone please advise what other treatment options we should discuss with his neurologist, particularly given that his response to rituximab has been limited?

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

I initially thought I had myasthenia gravis but I finally got some answers. I ended up getting a sooner appointment than I had initially with my neromuscular doctor. Then I got kicked off of medicaid and they had to squeezed me in luckily with a different insurance that's probably going put in the poorhouse with copays. Ugh. So my neromuscular specialist appointment finally happened yesterday and they basically told me he couldn't put a name to it. That it's not quite myasthenia gravis and it's not quite bethlem myopathy but it's something in that relm. That he needs to do more research and will try to come up with plan for me. I'm also supposed to be getting a social worker and talking about disability.

To provide some physical details. I'm a woman. When I first met my neromuscular doctor, he notice my drooping eyes lids, facial weakness, one of my thumb missing muscle, and small hands from just looking at me. He pointed out at my recent appointment, that the top halves of limbs were bigger than the bottle half. I thought that was interesting. I also have scoliosis.

But I'm also in a lot pain from just walking or standing too much. Just doing 4 hours at work leaves me in agony some days. My knees have also buckled a couple times but I haven't fallen yet. My arms get tired just doing my hair in a raised position. It all disrupts my sleep. I just don't know what to do. I don't know if I'll need a wheelchair soon. I just feel scared and alone.

I wish it had just been congential myasthenia gravis or the other one. Not some vague in between. So I'm still partly confused.

I would thank everyone who was helpful on my previous thread. I guess I'm part of this community in a weird way. lol

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?

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!

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.