June 21, 2021 at 4:26 pm #16355
When I first started experiencing symptoms of MG, I was in complete denial. I thought that if I ignored the signs, everything would return to normal.
In an earlier column, I wrote about how denial is never the answer when diagnosed with MG. If anything, it just postponed my treatment and made things more difficult.
How did you react when you were first diagnosed with MG? Did you feel relief, anger, sadness, or some other emotion?
July 2, 2021 at 7:40 pm #16399Kevin J FunaroParticipant
I thought I would test negative for it. But actually relieved I had answer for the tiredness of my body.
When you are a former smoker with stroke history it makes one a little anxious about what else it could be.
July 2, 2021 at 10:28 pm #16400
Completely agree about the relief part, Kevin. Even though I didn’t want to accept that I was sick, a small part of me was relieved to know my illness was something my doctor could identify.
July 9, 2021 at 8:01 pm #16442Elsa SafirParticipant
Denial was also a big part of my MG journey. I was 18 when serious symptoms showed up (inability to hold a pen to write an exam, limb weakness, double vision, speech and swallowing problems) and after several doctors did not find a diagnosis, my parents decided that all I needed to fix these symptoms was a vacation. Denial. Even after I was diagnosed with MG, my parents decided not to tell me what surgery involved: open heart surgery. Denial. Fast forward 34 years later, I know they did the best they could and that their denial was a result of feeling overwhelmed. It is not always easy to inform coworkers and acquaintances that you have MG. At least when I was young I did not disclose that to anyone. It was probably a bit of denial, but I did not have the maturity to explain well how my life was impacted at such a young age. MG loomed very large in the beginning days of diagnosis. Now it is simply something I live with and manage. Every day. I guess what I am saying is that over time you learn more about MG and how it affects you and denial goes up in smoke.
July 12, 2021 at 5:25 pm #16457
Exactly Elsa! The more time passes, the more you accept what is going on. I definitely feel differently about MG now than I did when I was first diagnosed.
Just like your parents, we’re all doing the best we can. As long as we take care of ourselves, it’ll be ok!
July 14, 2021 at 11:47 pm #16476David SeibertParticipant
When I was diagnosed about 2 years ago, I knew something was wrong. DV was my first Big clue. I had been experiencing fatigue but chalked it off as Old Age – 67 at the time.
Any way, DV kicked in hard, then extreme fatigue hit, and I was becoming disoriented. My wife drove to the closest VA medical facility and our diagnosis trip started. That lasted about 4 months until we saw a Neuro. Then came the Treatments and their effectiveness trip. Still working on that one.
I don’t think I was in denial for a period of time, I think I skipped that phase. I knew something was wrong, and felt it was either brain issues or nerve problems. Either case I figured I had it. Then it became a matter of what to do about it.
Many days bring times of wishful thinking, that sometimes seems borderline denial. I think we all have it. It depends more on not whether you have it or not, it is more how much time do you spend thinking about it.
Sometimes I think my MG is kinda like my friendship with Bill W. Both leave lasting changes – good some not so good.
I try to stay as busy as I can. With help, I take care of the lawn and gardens. I have some hours using my Flight Simulator, and husbandly duties occupies the rest of my days.
I wish that we were up in the mountains of New Mexico right now, but we can’t be, so we aren’t. Just trying to do my best today and some days are better than others.
To answer the OP’s topic: How did you react when you were first diagnosed with MG? Did you feel relief, anger, sadness, or some other emotion?
I think felt them all. And still feel many today – hopefully not at the same time. 🙂
July 17, 2021 at 1:10 pm #16511Rick FedermannParticipant
I am 65 and was diagnosed several years ago. I routinely did home projects in hot weather, used a treadmill desk all day at work and felt there weren’t enough hours in each day to do everything I wanted to do. MG symptoms were creeping in, but were dismissed as temporary circumstances that were easily explained. Then I experienced the full onset of MG and everything changed.
When I learned that it was probably MG, I was very unhappy. Physical limitations were not within my self-image. Then I tested negative for MG antibodies and brain cancer was considered a possibility. That was a punch to the gut. I began getting my affairs in order and reviewing everything with my wife (I handle our budget and such) so that she would be OK if I died.
After a couple of months of lab tests, scans and clinical evaluations it was decided that MG was the problem. I felt a great sense of relief that it was ‘only’ MG. It’s amazing how something is bad, until you think that it’s really bad, and then find out that it’s not really that bad, but is just bad. It makes bad feel good.
Nonetheless, MG limitations are real and it has changed how and what I do. For example, I relocated from Texas to Colorado because the cooler, drier climate dramatically improves my ability to function. In a recent neurology visit my doc said that she could tell I was suffering a classic MG symptom: “You’re frustrated at your limitations, aren’t you?” Yep.
July 19, 2021 at 2:07 pm #16527Jonathan AParticipant
I was positively thrilled when I was finally diagnosed with MYASTHENIA GRAVIS. It took me 8 months of searching for a reason for my weakness and all those symptoms. I have never been sick or even taken a pill except for an occasional throat lozenge. No doctor could diagnose my illness even though I told him my 8 or 9 symptoms … and they usually got worse in pm …unless I laid down and rested.
My healthcare provider was a total loss …. and thought I had just an old person’s illness and referred me to other doctors and the WRONG TESTS to try to verify their guesses of GERD, GOUT, Acid reflux, Diabetes, High Blood pressure, prostate cancer, blood in my poop, blood in my piss, heart chest pains. etc. They would not listen to all my symptoms and do APPROPRIATE TESTS.
At 6 months and getting sicker, I cancelled my CIGNA appointment and went to a BANNER hospital urgency care office. No doctor….. even three consulting neurologists were close to getting MG. Instead they gave me anesthesia for MRI and CT tests … that ” muscle suppressant IV” sent me into a deadly tailspin ….. as my actual MG was already suppressing my diaphragm breathing which was aggravated by being flat on my back for tests. I never got awake in PA recovery. The nurse called a code stroke, I was resuscitated and sent to ICU …. where I promptly contracted three types of PNEUMONIA. They totally failed to diagnose my MG from 2/4-27/2020 …. so instead they slit my throat, gave me a TRACH and a PEG tube and sent me in a late nite ambulance to a second hospital for LTAC.
For 4 more long weeks the second hospital failed to diagnose my MG. After 8 months of suffering and every doctor being totally clueless …. I found my angel … an intelligent and caring floor nurse … who saw my symptoms and wrote on my notepad. “I KNOW EXACTLY WHAT YOU HAVE. WE HAVE PATIENTS RIGHT HERE AT ST. JOSEPH’s HOSPITAL THAT HAVE ALL THE SYMPTOMS THAT YOU HAVE. YOU HAVE M.G.” the next day I got from them a computer print out from website http://www.uptodate.com called MYASTHENIA GRAVIS – THE BASICS. She saw that I was tested, got IVIG and was on medications. I WAS SO HAPPY I HAD A NAME FOR MY DISEASE. All the symptoms on those pages matched my symptoms as well as the OCULAR M.G. symptoms that that TERRIFIC FLOOR NURSE recognized right off … hand holding up droopy eyelid, one eye closed to see better. and the right arm holding up my weak hand, holding up my left eyelid to see tv.
I had to communicate with the nurse by my yellow pad because the first hospital gave me THREE PNEUMONIAS …. that they gave me ANTIBIOTICS to cure …. that gave me total hearing loss and loss of speech for four months at three hospitals till I way finally released on 6-12-2020 from third hospital. Previously due to CIGNA referrals, I was sent to a heart specialist for three very invasive tests … including a CARDIAC CATHETERIZATION .. through my now shaved crotch …when the wrist vein entry of a camera thru my right wrist failed. That doctor wrote in his report that I was a “POOR HISTORIAN”, said my heart was fine, and sent me back to CIGNA ….. that they would need to properly diagnose my 8 or 9 symptoms. The doctor just could not comprehend that my 8 or 9 symptoms were all one disease MYASTHENIA GRAVIS. I now had a name and medications so that I could finally be in REMISSION for a year now. Do not accept clueless naive doctors … keep looking for your diagnosis. It is MYASTHENIA GRAVIS >>>> YOU NOW HAVE A NAME … as well as a Med-alert wristband … for all the new clueless doctors … should you ever be sedated or speechless or suffering from their induced 4 months of TOTAL HEARING LOSS.
July 25, 2021 at 12:48 am #16587David SeibertParticipant
What a Horror Story –
Our Opthamologist in Cottonwood, Wa., gave the name first. He couldn’t diagnose but did provide a direction.
At that time, we were 3 to 4 months out to see a Neuro either in Phoenix or in Houston. We headed to Houston and the following Monday we were at the local VA clinic, bright and early, and sat there until we were seen by the On Call Doc for the “Sick Bay “Doctor. We waited a couple of hours and saw the Doc. After this meeting we saw my Neuro within two weeks. My PC did prescribe some meds to calm me down, as I was was quite agitated and “Insistent” upon getting some answers and hopefully action. She took about 4 gallons of blood in the next few days and a number of other tests. (We did have my complete medical records with us.)
In retrospect, During the time that I was experiencing severe symptoms , we were in the ER 3 times and never went into Crisis and my symptoms seemed to recede, so after a couple/three hours per visit I would be released. Always with more tests. We tried to stay busy and not to take to much time worrying about it. I knew I wasn’t dead yet and this MG thing probably wasn’t going to kill me, so my time was directed towards researching this disease/disorder to try to figure out which way I should be going and what I needed to do next.
The Neuro took more tests and prescribed mestinon and the IVIGs began.
I did experience a bit of denial today though. My wife and I have been looking forward to getting away for a bit. After taking consideration of our options and my limitations, we decided that a cruise would work. We found a nice cruise last night. Not too long, not too short and there were some interesting things to see along the way. We decided to make the reservations this morning. This AM on the TV we saw the spiking of Covid 19 in the Houston area and there happened to be a number of infections on the vessel we were considering. We reluctantly agreed that this is not a good time for an Immunosuppressed human, me, to travel especially not knowing if the Vaccine is effective.
Sorry to have rambled on…..
or if my comments drifted away from the original topic.
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