[Andy]

I agree with Cheryl. Your fear is real. I got MG about a month before COVID. Since that time I’ve carefully avoided large gatherings, mask when shopping, get COVID and flu shots and have lived a fairly hermetic existence. Fortunately/unfortunately my wife is also immunocompromised with RA. A couple of years ago, after a surgery and recovering at home, I had a pulmonary embolism. It gave me a taste of what a lung muscle crisis might feel like. Let’s just say I’m glad I live 5 minutes from an emergency room. People with autoimmune diseases have much to contribute to our society; we are not expendable.

[Andy]

I really appreciated your attention to detail with your timeline. I was diagnosed with generalized MG in 2020 and had a thymectomy to no avail. I’ve been on Soliris almost ever since and it has saved my life. You did not mention any initial symptoms of muscular weakness in the arms or legs or aspiration that I experienced along with drooping eye and double vision. You were fortunate, as I was, to have an opthamalogist diagnose you so quickly; folks can go months or years without a diagnosis. Since 2020 I have aspirated a couple of times to the point of blacking out; what saved me in each instance was transcendental meditation…basically calming myself to relax my throat muscles and resume normal breathing. I highly recommend a meditation practice for those of us with MG.

[Andy]

I, too, have urinary incontinence and have never figured out whether to attribute it to a botched catheter insert during my thymectomy or my BPH surgery shortly after or Mestinon or MG itself. Kegels have provided minimum relief thus far, so I use Depends pads and have a mapquest of bathroom locations ingrained in my brain before leaving home. Before taking any medications, be sure to check to see that they are not contraindicated for MG. Propanthaline (Pro-Banthine) was mentioned in this thread, however, a quick Google search suggest it is contraindicated. I’ve found that several doctors I’ve encountered can be very flip about MG.

[Andy]

A thymectomy may or may not work…no guarantees, however, you may not want to look back and say “should/coulda/woulda. I had my thymectomy in 2021 (one year after my diagnosis), using the robotic “Da Vinci method,” with Dr. Louie (he’s tops in his field) at Swedish Medical Center in Seattle, WA (I traveled from S. Oregon and stayed overnight for the procedure). Dr. Louie informed me that current best practice these days is to go in from the left side (which involves collapsing a lung). Unfortunately, due to BPH, I opted for a catheter during the operation and the administering nurse punctured my bladder…so I suggest opting out of that particular offer. To date I’ve had no relief as a result of the thymectomy and am fortunate enough to be on Soliris and mestinon and not any prednisone. I’m 77 years old and the clock is ticking…

[Andy]

Kudos for taking the risk. I’m 77 and not had sex with my partner in years due to a combination of factors including treatment for BPH and low libido. In my own case, I think anxiety has become a factor as I find any form of intense exertion off-putting. My challenge is to find more satisfaction in other forms of shared intimacy rather than seeking outright release. As I’ve had this condition for several years, I’m becoming more and more convinced that stress, accumulated stress, is a major factor in neurological diseases which seem to becoming epidemic in our culture.

[Andy]

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]

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]

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]

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]

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]

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.