[Andy Seles]

Well, assuming you know the difference between Thymoma surgery and a thymectomy, I had the latter a couple of years ago with Dr. Louie, a top U.S. surgeon, in Seattle, WA. Dr. Louie maintains that the best and latest robotic technique is to go in on the LEFT SIDE, collapsing the left lung and proceeding under the heart to remove the thymus. Even though this sounded daunting, I had it done. I’m now 76 years old and still on my infusions and mestinon with no perceivable changes from the surgery (which I’m told can take up to ten years…or never). Was it worth it? In my opinion, it was because I’m someone who would always be wondering “what if?” Anyone considering a thymectomy: if you can have the surgery done WITHOUT a catheter, I would recommend that. I opted for a catheter and had complications that extended the surgery time.

[Andy Seles]

I highly recommend Tai Chi classes. I was a Tai Chi student for several years many years ago. On the few occasions when I’ve fallen my wife always points out how “gracefully” I’ve fallen and I always credit Tai Chi. “But you don’t practice,” she says. “But I do…in my mind,” I reply. But that is not really accurate. My body evidently has “Tai Chi” memory for which I am grateful. I do currently practice Chi Gong which I also believe to be beneficial.

[Andy Seles]

My heart goes out to all of you who have shared.  MG is truly a “snowflake” disease and I have yet to see a carbon copy case.  Since I was diagnosed over two years ago, at age 72, I have seen a half dozen neurologists (at great distance since no competent ones were nearby).  I am on Soliris infusions every other week.  Not one neurologist gave me a similar protocol in terms of medications or menococal boosters.  One neurologist insisted that I take a daily antibiotic while on Soliris (I don’t and won’t).  Another told me a needed a menococoal booster after two years while a pharmacist told me three.  Another told me a thymectomy was useless, especially at this age; another told me to go for it (I did).  IMHO, we just have to find a neurologist we are comfortable with and “do the dance.”  I’ve always been told I have an “on/off” switch when working.  MG is evidently trying to teach me to modulate, but I’m a slow learner.  It’s tricky because I also know I need to use it or lose it; I walk two miles a day religiously plus doing home garden work.  (Some days better than others in terms of fatigue.)  You are not alone; and, evidently, there will be more of us as I recently heard on a televised national health conference that neurological disorders are the next “pandemic,” supplanting the focus on cancer treatment.  That’s not meant to comfort anyone except for the hope that more research will go into causes and treatments.  Blessings.

[Andy Seles]

I’m one of those rare MG patients who, thanks to my wife’s tenacity, got onto Soliris infusions every other week.  Along with mestinon regimen, my diploplia (first sign I had MG two years ago) is fairly well under control with a few caveats:  1) if I forget to take mestinon or get stressed, 2) late in the day, watching television, I get to see two of everything.  Even though I’m 74, I decided to get a robotic thymectomy with Dr. Louie (Seattle, Swedish Medical Center).  Still waiting to see any changes…could take up to a year or longer but worth the risk to me.

 

[Andy Seles]

I was diagnosed with MG a year and a half ago.  I take mestinon and get Soliris infusions every other week.  I was able to delay the infusions for ten days on either side of my first two Pfizer shots.  Because I was away from home I got my booster after a 5 week hiatus from Soliris.  I had no reaction, zero, nada from any of my shots.  Is that a bad sign?…maybe, maybe not, as Leora said, “The immune system is more complex than antibody levels drawn at any given time.”  There is some growing evidence that surviving Covid may grant better immunity than the vaccines, however, at the age of 74 and immunocompromised, I’m sure not taking that chance since MG is strike one against my lungs.  I also wear a mask on the rare shopping trip, do not socialize indoors and keep social distance outdoors (and, then, only with two or three people).   QUESTION FOR THOSE TAKING SOLIRIS: Are you also taking a daily antibiotic?  One neurologist told me that, even after taking the vaccines for meningitis, I would still be in danger of contracting the disease unless I was on antibiotics…not eager to do that!  My heart goes out to all of you coping with this snowflake disease; the journey can be lonely at times but please know you are not alone (thank you Jodi for creating this community).

[Andy Seles]

A challenging question…what could be positive about MG?  Like you, Michelle, I’ve been given the opportunity to embrace an “attitude of gratitude.”  MG has made me more conscious of my energy levels.  It has made me realize how much internal anxiety I was ignoring for so many years (I have a suspicion that chronically stressed nerves are, at least, in part responsible for over-reactive antibodies.)  I’m practicing “checking in” with myself during the day on my anxiety levels…what pushes my buttons.  I’ve been a life-long meditator but I’m increasing my practice…another MG gift.  And, of course, MG has brought the reality of mortality home, making me appreciate every moment I’m alive.