Missing Major Life Moments Due to MG

[Ronald E. Clever]

I come from an older family so much of the major life events happened when I was younger.  I have a group of us that used to meet every weekend or every other weekend just to keep in touch but then the pandemic happened.  With things loosening up they are starting to get together again and I just don’t feel safe yet.  They understand but I initially thought maybe I was being too careful but with the way things have gone I am grateful to still be practicing safety guidelines.  I don’t know when I would feel safe again.  If there were major life events I would have to stay away from them also since for like funerals there is a good bit of walking and standing and I cannot tolerate that.  My legs are too weak and with back problems it makes it worse. MG has changed my life in the way I socialize.

[Alan Polishuk]

Ronald you sound like you could be my spokes person I have such weakness in my legs that standing and walking short distances are impossible wish I had my legs back!

[Amy Cessina]

I don’t go out for dinner due to MG. Dinner foods are harder to eat. I will go out to breakfast and lunch. Most places here you can eat outside. I haven’t eaten inside in a few years. Never felt safe even before the pandemic. People just didn’t stay home when they were sick and all my bad flare ups have been illness induced.

[Jonathan A]

That MYASTHENIA GRAVIS problem hit me really hard  … and I could not attend the 50th reunion of my 1969 high school reunion in October 2019.   I had already paid to go  …. and at that point in time, I was taking each medical decline one day and hour at a time.  What was wrong with me.  I had NEVER been SICK.  I had never ever taken any pills beyond throat lozenges for my tired at times singing voice.

On July 25, 2019, my first symptoms  ….  the OCULAR MG ones … appeared …   as with every other first time MG victim.   My eyelids started dropping and I had to hold an eyelid open during the daytime to drive to doctors and the pharmacy for medications  … weak as my legs and neck were becoming.  My eyes seem to be competing to see which was better  (others say its called DOUBLE VISION  … but I was totally clueless ..along with the CIGNA eye doctor.)   At nights trying to drive home from work, I had to take the darker side streets with fewer streetlights  …. as EVERY STREET LIGHT on main roads  … was a giant CHRISTMAS STAR (off the greeting cards) shooting long rays of light rays down to me. Is this why old people don’t drive at night ?????

I kept wishing I could go to three days of events, mixers, and a football game,  as I had just attended the 50th anniversary of the school’s founding two years earlier and had a blast with all my old friends.   The girlfriends all still looked great and aged well.  The guys were going bald and/or gray  … while I still had my original full dark brown head of hair  … being Italian with a grandfather that lived to 98.  But there I was ….  taking one day at a time, trying to drive safely down to the corner to get meds, and go lie down to rest my un-diagnosed legs and eyes again.  I even googled street maps  ……   to see if there were backroad neighborhood streets to go to doctors or my 50th reunion events safely  … while holding one eyelid up to see.

For 8 months  … till March 25th, 2020,    NO DOCTOR could diagnose my MYASTHENIA GRAVIS.  Unlike other MG patients seeking a diagnosis,  my eye doctor was clueless and did not refer me to a neuro eye doctor, who in turn would have referred me to a REAL NEUROLOGIST, …. who would have recognized my symptoms, and given me TESTILON and Antibody tests   …..     and a MG diagnosis and IVIG treatments.   It was an intelligent floor nurse, after 2 months in 2 hospitals, that recognized my MG Symptoms from some of her other patients and told me what I had and got me tested after 8 months of suffering.

The 1970 McClintock High School reunion was postponed due to the “CHINESE PLAGUE” that I totally missed   …  because I spent five months of 2020 in five hospitals recovering from doctors miss-diagnosing my MG and giving me instead THREE types of PNEUMONIA,  total  speech/ hearing loss (for 4 months),  and Acute RESPIRATORY FAILURE.   One does not  give dangerous anesthesia to suppress breathing for MRIs and BRAIN scans …. when undiagnosed MG patients … such as myself, already have suppressed breathing and are choking on their own phlegm, while being forced to lie still on their backs.

So the 1970 McClintock High reunion will now be on October 17 to 20th in two months.  I am in remission and can see and drive safely at night now.   But my class was 1969, and I know so few students of 1970  … especially after 51 years.   But I am eager to get back out again  …. and see a reunion that I missed out on    … even if it is for 1970 and not 1969.

After the clueless doctors gave me BAD ANESTHESIA on February 4th,  2020, I could not come out of it.  So the nurse in recovery called a CODE STRIKE  … and I was resuscitated back to life  … and I am ready to expand my boundaries and get my life back.  I was technically DEAD  … and now I am alive.    All my 1969 classmates were asking where I was  …..  but the CIGNA doctors were totally clueless, not listening to my 8 or 9 MG symptoms, and were referring me to other doctors, based on what disease an old person SHOULD HAVE  … and not the symptoms I actually had  … which meant very invasive heart and gastric tests  … for diseases I never had.

The first two hospitals were totally incapable of diagnosing MYASTHENIA GRAVIS.   After 11 months of doing BANNER hospital paper searches online,  I found out that the  THREE NEUROLOGISTS at the first hospital totally missed my MG … and in their consult papers about my condition  ….  were guessing a stroke  …..  or toxic metal poisoning, even though by that point,  I had every one of the MYASTHENIA GRAVIS symptoms that all of us have.

SO I AM ALIVE AGAIN  …. and trying to be me again and so wanting to go  … even if I know so few from the 1970 class.

[Jonathan A]

Reply to Amy.   I was out running a few quick errands yesterday  …. as I had to pick up my replacement meds at FRYS Pharmacy.   I was not in the mood to cook dinner when I got home.  So I went to WHATABUGER.  The doors were locked  … only drive thru. I WANTED TO SIT AND EAT.   So I drove to MC DONALDS.   I got in the door. Everything was roped off.  They let me order  … but I had to take my Big Mac Meal home and eat it.    With these new DELTA variety CHINESE PLAGUE  ….  now the food places that were open two weeks ago are closed  …..  and I am in remission since November  … but the energy to take time and cook just is not there any more.

Also I am formerly from Minneapolis  … Swedes, Buffets, and Pork Tenderloin sandwiches (that you can pickup at the nearby bars and bowling alleys) are huge  along with EVERY GROCERY STORE    …. having a large cold salad/fresh fruit bar as well as a hot chicken, sausage, soup, and meat balls bar was terrific.   You could bring home a couple pounds of fresh food and eat/snack for a week without cooking.  In Phoenix … the salad bar offerings were weak, but if you had finally escaped after four months in three hospitals from your MYASTHENIA GRAVIS doctor mis-diagnoses, you were dying to get your pharmacy medications and stop over at the salad bar… but every grocery store had closed their salad bar  ….    You arrive home pooped out and laid down  … till you rested enough to get up and microwave leftovers, or a TV dinner, or even grab a few grapes to hold you over.      I MISS THAT  !!!!!