Myasthenia gravis topics you would like discussions about

[Craig Whitney]

Stress just kicks my gMG into overdrive, way more than I have experienced before my diagnosis in 8/2022. Hearing how other folks deal with it would be helpful.

[Lor]

I had a meniscus repair on November the 1st 2023, was on non-weight-bearing crutches for 4 weeks and this caused a flare up. I am still in a flare-up and I am having terrible slurred speech. Please tell me this isn’t my new normal? Has anyone else had flare up symptoms and how long does it take to recover.

[Diana L Ramsey]

I’d like to know more about what it means to be seronegative.

[Bli shame]

Have others had a problem with excessive sleepiness?

[Craig Whitney]

Yes. Sometimes it seems like all I can do is sleep. Other days, not so bad. This may be an age-related problem, I am 76. But for the first year after my diagnosis in 8/2022, just getting out of bed before noon seemed impossible on most days. That amount of sleep was a big change in my life with gMG. Neurologist switched my treatments from Ultomiris to Vyvgart recently and that (and Mestinon, Cellsept, Prednisone) seemed to help.

[MikeS]

1. Besides just resting or meds, are there other ways to deal with MG-induced muscle fatigue?

2. What triggers have you discovered that will definitely induce your flare-ups and how did you learn to avoid them (the triggers).

3. What solutions have you found that will relieve (some of) your side-effects from Prednisone.

4. Same as (3.) but for Pyridostigmine (Mestinon).

5. How much have virtual (Zoom) meetings helped you deal with your MG and specifically in what ways?

6. Do you use cannabis for relief from MG and, if so, how does it help you?

7. What online sources and websites do you usually go to for finding information/resources to help you deal with your MG?

8. Would you support the establishment of an online “library” of information and resources for all MGers to use (not MGFA)?

[paul spychalski]

Does Zilucoplan work???

[MikeS]

As with any other MG drug, it may or may not work.

[Frank Morrow]

How many members in the MG Community are taking one of the four new approved FDA Treatments for MG released since 2021? I’m under the impression that 50,000 to 70,000 people in the USA have some type of MG diagnosis.

1) Vyvgart-(efgartigimod alfa-fcab)

2) RYSTIGGƠ – (rozanolixizumab-noli)

3) ULTOMIRIS – (ravulizumab-cwvz)

4) ZILBRYSQ – ( Zilucoplan)

Any type of subject matter that is able to compare or provide the patient with pro’s and cons is of great interest because most patients have to be able to self advocate for themselves to their doctors.

[paul spychalski]

Pyridostigmine 30mg 3X a day.

[Barbara E.]

When we get sick… Suggestions for dealing with illnesses (like cold, flu, and other viral/bacterial infections) without making MG symptoms worse (hopefully).

[Cheryl]

Would like survey on how many people developed MG or got worsening after taking Levaquin or Cipro. Were you told of correlation? What antibodies did they find? Has it gotten better? Have you taken these antibiotics since getting MG?

[Barbara E.]

I had a horrible allergic reaction to Levaquin before MG, so have avoided it since. Also, I and my doctors try to avoid any medication that’s listed as problematic for MG patients. I don’t want to make a bad situation worse.

As for cannabis, I don’t want to take any chances at this time.

I do find several MG support group zoom meetings helpful. Not only does it remind me that I’m not the only person dealing with MG, I’ve gotten many helpful suggestions from the other members. I found these groups through the MGFA website (started with local groups and attend other regions for special presentations).

[Ari Maayan]

I’m not sure where to put this, so I’ll post it here and see what happens. I have a lot of topics I need to discuss but today, my MG family, I would like to discuss a topic that I haven’t seen discussed but I’m sure affects many of us – balance problems. I think there’s an inherent aspect of MG that has a negative impact on our ability to balance when standing and/or walking. It is a major issue for me and has been getting worse in the 8 or so years since I was diagnosed with MG. And the issue that goes along with it is encroaching muscle weakness. Right now I’m working with my PT at the VA on my balance problems……and they are serious. I fall fairly frequently even using my cane. I think that my combat-related PTSD is a contributing factor.

Anyone want to add to this??? I hope so.