Unusual MG Symptoms?
Hi MGers, hope your all coping ok. I was diagnosed with MG 2 years ago after waking up with double vision (which I still have). I had an almost cancerous thymoma removed robotically a year and a half ago. I have been lucky to date that I have had no other symptoms but just recently I have shoulder/neck aching and neck clicking when I turn it. Also have aching pectoral muscles/arms and jaw that comes and goes. Anyone else experienced this? I am of course hoping that it doesn't get worse as I am 2 years in to diagnoses. Any reassurance would be greatly appreciated. Thanks in advance.
I've run the gamut of meds and procedures since 2017 when it really pulled the rug from under me. At first it was Ocular, then inability to swallow, speak or breath correctly. Now it works quite a few muscle groups but my ocular and breathing is the most prevalent. Pyridostigmine (mistinon) is my main med in quite a healthy daily doseage ( slow release 180 mg twice daily and regular 60 mg 6 times daily) as well as IVIG infusions every 4 weeks. Talk to your neurologist of progressive symptoms as mine has now affected many different places. Yes it will progress.
I've been coping with mg for over a year and a half now. The symptoms I'm mostly having is paranoia. I'm almost always second guessing myself. I feel frozen afraid to.make any moves.
My neurologist has me on monthly 3.5 hr. Infusions, mestinon, prednisone. I'm looking in the mirror at a different person. And asking God: why me? In one out of a million! I don't know if any one will read this, or it goes.into the dead file. But it's real man.
My doctors say I look good, but feeling good is a whole nother ball game.I've read that we are 1 of 78 in a million, pretty special.
And asking God: Why Me? HE has special plans for your life, it's all just changed a bit. I was DX at 75 yrs old... swam in an ocean triathlon at 71 yrs old, 40 yr old daughter was the bike leg, granddaughter (😎 did the 5K, we came in 2nd place for the women's relay... and I now have MG??? I'm extremely active in our church and this knocked me off my feet - while my retreat co-leader was DX with uterine cancer! But God provided a team that took over, listened to our directives, and now those women are empowered to take this year's retreat. What a blessing!
For years I brought communion to homes on Sundays, now I am the recipient, and seeing all my friends 1 on 1 on Sundays. That's because the high prednisone the MD gave an old lady with osteoarthritis, this ate up the top of my right femur bone and low back, so I needed hip replacement that had to be delayed - so basically I was walking on a gravel hip bone, extreme pain. Haven't driven car for 8 of the last 12 months!
Mostly, accept where you're at, thank the Good Lord you are not an orphaned child in bombed up Ukraine or Russia, or starving in Africa. You are legal in this country and not being harassed and deported away from your family over paperwork.
Fear not for I am with you; be not dismayed;
I am your God.
I will strengthen you, and help you,
and uphold you with my right hand of justice.
Isaiah 41: 10
For I am the Lord, your God,
who grasp your right hand;
It is I who say to you,
"Fear not, I will help you."
Isaiah 41: 13
Wishing you Peace,
Numbers 6: 24-26
It's not unheard of to have had MG go into remission as a result of your thymectomy just like it's NOT unheard of to have MG come back out of remission for no apparent reason. Get with your specialist and key health care providers as quickly as possible. And if you're a praying person I hope that you've NEVER stopped talking to God.
i got mg after my thymona had it removed only because it was cancerous stage 3 need 55 rounds of radiation in 2008. crazy never had any systoms until 2021! had a crisis needed plasma exchange but took months to be normal again but still on steroids now having few hallucations from predsione
I envy all you people who ONLY went 2 years here or 5 years there. I almost immediately started exhibiting symptoms after a horrific car accident that I was in at age 16 that killed me and 2 other people (my dad and my aunt [his oldest sister]). For 30 plus years (just made 50 on my b-day this year) struggled with symptoms being guaranteed that they were NOT associated with ANYthing else with which I'd been diagnosed. Even still when I finally got the diagnosis in April 2021, I damn near had to die for that benefit. 🙃
Now it's SO VERY DIFFICULT to get new people (Medical types) to my team to understand that I didn't get diagnosed & then get inexplicably bad. I continued to get dangerously worse over time particularly without diagnosis nor treatment then I FINALLY got a diagnosis now here we are, and certain "missteps" along the journey have NOT helped.
My fabulous PCP has a wonderful sign in ALL her exam rooms 😀 "Do as much for the patient as possible and as little to the patient as necessary". Why can't it ALL be just like that?
