Karen

I had a port placed >7 years ago; which had to be replaced by 2 “vortex” ports to support PLEX. Like any implanted medical device, there are risks—I’ve had my vortex ports in for 6 years and last year one had to be removed b/c I had blood clots in the subclavian and internal jugular veins. Prednisone killed off my venous excess, so I still have on…[Read more]

I was able to get insurance under the Penn State alumni association—many big schools provide insurance options with limited health info—-only only got $65k for $650/y—but it’s better than nothing. Life insurance through your employer (if applicable) many not require any health evaluation—I was fortunate to work for the federal government and can k…[Read more]

I have a sign on the window by my front door asking that anyone who enters the house wear a mask (and I have some by the door if they don’t have one). I’ve never had anyone take issue with it.

My total income is too high for any programs, but fortunately I was able to enroll in a catastrophic insurance prior to having issues…while they have a $100000 deductible, they count what my primary insurance pays in addition to what I pay and one the deductible is met the cover everything my primary does pay (I.e copays, co-insurance..) this y…[Read more]

I have been told that I could not switch providers within a group b/c by accepting anyone in the group I was by default accepting all of them as the cover for one another; however, I believe that who you choose as your primary neurologist should be your decision–even if you are taking the chance of having the one you dislike “covering” at some…[Read more]

I’m glad to hear that it helps you; however the title of this post is. very mis-leading. Blue Light DOES NOT ease MG eye muscle weakness–you explain that you are wearing glass that BLOCK blue light, therefore it is the LACK of blue light that is helpful.

RESEARCH HAS SUGGESTED THAT BLOCKING BLUE LIGHT CAN EASE EYE STRAIN IN ALL PEOPLE.

I agree…[Read more]

I’m seronegative..I thought I’d responded to this post earlier but I don’t see it..I’d love to get involved in the zoom meeting.

I was started on Mestinon empirically with a drastic improvement in sx and have not stopped it since—my official dx (SFEMG as am ACH and MUSK (-))

It sounds like most of the respondents are generally in better health than me—I have chronic respiratory failure from MG and up until 2 months ago was sure to walk with 1 crutch around the outside of my house (with numerous breaks) ~ .2 mi, and go up the stairs 1/d (down does not work safely for me—gravity takes over..I have an elevator in the hou…[Read more]

I didn’t consider low pressure as I don’t live in a high altitude; however, I cannot fly b/c they don’t pressurize the planes well enough. I found out the hard way on a short flight (Orlando to Richmond VA). I was hard to arouse when we were near Richmond (my husband just though I fell asleep)— I was having problems breathing. Fortunately I had m…[Read more]

Definitely HEAT takes me out—above 80 degrees results in emended fatigue—84 F in the sun and its too much—I overheat (for some reason I do not sweat much at all—my skin gets very hot) and I need to get cool quickly and am out for the rest of the day.

I use a cooling vest (Polar products?) so I can go out at all in the spring/summer (I live in…[Read more]

Hope is what I desperately need!

I am very disappointed that Vvygart (efgartigimod alfa-fcab) was not approved for sero-negative patients. While clinically, it is “loosely” referred to as an in-vivo PLEX (PlasmApheresis), I strongly believe it should be available to all MG patients who have responded to PLEX as well as those in the clinical tri…[Read more]

I am sero-negative and after >30 years (officially ~15 years..the rest of the time it was “all in my head”) my baseline now means I can’t chew much, have chronic respiratory failure due to muscle weakness, extreme heat intolerance, fatigue that great limits any activities after ~3pm ( even after my daiy nap)…I’m extremely mad about the FDA…[Read more]

…while not “illnesses” per se, I am also diagnosed with neurogenic bladder, chronic constipation (requiring a “cleanse” every 4 days), esophageal dysmotility, GERD, gastroparesis along with my seronegative MG…and also AVN of my R hip from years of IV steroids

I have sero-negative gMG and am surviving due to PLEX every other week—I’m really disappointed that the FcRn antibody treatments are only for ACh (+)…. As they are considered “in vivo” PLEX (blocking formation of IgG only instead of removing all antibody types) it should be made available to all patients with MG in whom PLEX shows benefit.…[Read more]

I’m not sure how to go about it, but we must petition the FDA to reconsider approving the drug as all current clinical studies have excluded seronegative patients; alternatively we could petition the drug company to perform a clinical trial in seronegative patients, but that is not cost-effective for them; therefore unlikely.

The mechanism of action is to block the FcRn (neonatal (formally fetal) receptor) which is needed to create IgG antibodies— almost all auto immune diseases result from production of IgG antibodies which erroneously target and interfere with the normal function of a receptor (such as the ACh receptor in MG). There is no reason to suggest it would n…[Read more]