What Are Your Life Passions?

[Jonathan A]

I am safely for the past 15 months in remission with CELLCEPT and MESTINON,   so I am slowly getting back to working on projects and gardening, now that I know that I have  “finger strength” back to keep the grip on the “on levers” of mowers and edge trimmers.  Also I am now confident enough to get back down on my knees again, and know that I can stand up again, without my calf muscles dying, and having to crawl back and get into a chair or a planter box edge to rest, and try again to get on my feet.

So being in remission NOW.  I feel that I am ME AGAIN  ….  and can start considering what passions I can go back and restart.  I was in five hospitals for 5 months,  and had total loss of speech and hearing, due to a hospital overdose of ANESTHESIA to keep me still for CATs and MRI’s.  Then I contracted in their ICU three types of PNEUMONIA,  so they gave me TOBRAMYCIN and other ANTIBIOTICS, so I had total hearing loss for 4 months also.  So I am thrilled to be hearing and talking again  … so want to go to concert venues, or even a local sing-along or a Karioke (sp??) once people can start meeting again.

Also now that I was finally diagnosed with MG by a hospital nurse, after EVERY DOCTOR FAILED he for 8 months, I have been attending by ZOOM three MG support groups, and learning from them … and how they made it to a diagnosis and their tips  …. but it would be so nice to talk to MG people IN PERSON.  I have yet to me one,  and share war stories, and who are the GOOD doctors in my area, and which ones are the clueless NEUROLOGISTS, who were unaware of MG and kept testing me for stroke, seizures, GERT, diabetes, heart attacks, toxic metal poisoning, and infectious diseases … instead of REALLY LISTENING TO ME …. and my symptoms.

But I am happy to be well again. So refind your passions, and take time for resting breaks.  WISH YOU SUCCESS…. Too.

[Greg Goff]

I was diagnosed with MG in April 2021. I started  having symptoms In March 2021. I had Covid in February in between first and second Pfizer shot. Not sure if there is any correlation. Mine started with double vision and droopy eyes. I do have dry eye conditions. Went to three different Opthalmologists who wanted to treat dry eye problem. None talked about MG. I started slurring my words in April 2021 and made appointment with my Primary Care doctor who thought I may have had a mini stroke. An MRI that evening revealed no stroke. My doctor ordered blood test and as a result was diagnosed with MG. CT scan was done to rule out Thymus gland.

I was referred to Neurologist and started taking Pyridostigmine(3 each 60 MGS tables daily) prior to appointment. Double vision/droopy eyes went away after a few days. Slurring was still a problem.  Met with Neurologist in June 2021. Pyridostigmine was increased to(4 each 60 MGS) per day and I started taking Prednisone(2 each  10 MGS daily). Prednisone  was gradually increased to (6 each 10 MGS )daily over 5 months . Symptoms went away and Prednisone was gradually reduced to (10 MGS ) per day and Pyridostigmine was reduced to (3 each 60 MGS) day. These are my current doses with an occasional slur otherwise symptom free.

I was referred to a Neurologist at University of Washington for  second opinion. They were happy with my current treatment. I was concerned about the progression of MG and other meds available for treatment. They do not believe this will progress any further and other treatments are for more severe cases. I guess I should be happy since there people with severe MG symptoms.

Overall my Primary Care doctor identified this at an early stage and I was able to interact with my Neurologist via emails to adjust my meds without having a face to face appointment. This really helped me. Hopefully I will have this under control. Only time will tell.

[Amy Cessina]

Personally I want to own a horse for riding . I live on a lot of land and always wanted farm animals. But likely I can’t own much because where I live has some persistent bears and  a large pack of coyotes so it’s hard to have some animals but I think a horse would be fine. I have been collecting mid century modern furniture too and have some very valuable pieces I’d like to decorate my entire house in that style instead of much of it being in the attic and garage.

[Leilani Scholtz]

I diagnosed, 2 months ago. I play tennis 4x/week and my hope is that I will regain my strength to be a more competitive player. I was a lifelong runner until I started getting severe shortness of breath of unknown cause and had to stop running. Mestinon and prednisone has helped me and I hope to start running again soon!

[Kelley]

I was diagnosed 26 years ago. After a year I was able to get off prednisone and all the other meds I was on and resume my life with occasional MG symptoms (mostly breathing and vocal cord issues). This lasted until about 2014.

After a dose of Clindamycin my symptoms returned with a vengeance. I was running a karate studio with my husband and training for my 4th degree black belt. Prednisone, IVIg, Cellcept, Imuran, thymectomy, a few crises, bipap, plasma exchange, intubation, tracheostomy, 3 surgeries due to prednisone side effects, and lots of time later, I am relatively stable as long as I don’t get a cold and plan all activities (including showering, making a meal, picking up prescriptions etc) to coincide with mestinon and a ton of rest.

I still enjoy going to the karate school with my husband. I watch, support, and make verbal corrections when I’m strong enough. It still feeds my soul, just in a different way.

Besides karate which is directly affected by my MG, my grown kids and my elderly dog are my passions.

[mary-s-browder]

I started having symptoms Dec2017.  By April/May I was having severe double vision and on my second doctor to find an answer. I had to retire from a job I loved teaching a scrapbooking software for a large photo storage company,  who had purchased the company I helped start.  It was discouraging.  Dec 2018 and on my 5th doctor I received my diagnosis.   LRP4 Mg.  High dose Prednisone was started and Cellecpt.  Eventually IVIG and now SQIg.  Over the next few months and after an an exacerbation my doctor has me very stable and Feb 2020 I was able to be rehired by my previous job and have enjoyed working again.  It’s primarily at home and my SQIg makes it easy to travel on business trips.  I have a very supportive health care team and husband so I am bleassed and very grateful.

I’m starting to exercoise again, no remission though, but definietly under control on Hizentra, and Cellcept and very rarely Mestinon which my doctor lets nme regulate as I need it.

I can travel for both business and pleasure now, see my kids who live in other states and grandchildren. I was even able to hike a little in some national parks last summer.  At 62 and an MGer I felt a sense of accomplishment doing that.

[Maureen Gosz]

At 60 years old my lifes passions have changed. I was working with my horse to do endurance riding, when MG crept up on me. Being misdiagnosed for years ,I was finally diagnosed 2 years ago. Needless to say, I had to get rid of my animals.
I have always had a passion for flower gardening, which has expanded to many flower beds. I cannot do what I did in the past, being on my hands & knees for hours, digging, planting, ect…but I take lots of breaks. I cannot work at them all, so I work on one a day, or maybe longer. When I’m in my gardens, that’s all that’s on my mind at the time. It lets me escape from my disease for a time.
Also, living on a farm, people randomly dump their animals. Right now we have a big kitty that adopted us! He is a sweetheart, and an amazing mouser! He drops his kills for us at the back door! After our dog died, it’s been hard to try & get another, and then this guy shows up! God works in mysterious ways!