Myasthenia Gravis

I'm now 65 ... well, in 30 days. I was diagnosed with Myasthenia Gravis at 51, and had already been on Disability for Fibromyalgia for a number of years.

Do you know that one friend who's more of a "frienemy?" They will always push you to turn loose of your past, and to look forward; they push you to be your best version of you in the "now," because yesterday only matters as a place you learned lessons. Sometimes they try to over-parent you, telling you that you really shouldn't do things that you really want to do; and if you ignore them, they're right there the next day, clicking and shaking their head and saying "I told you so."

On a bad day, my "frienemy" stands mutely by waiting for me to finish trying to compare the things I could once do on a bad day with the things I can now do on a good day. On a good day, my "frienemy" reminds me that the past isnt where, or who, I am now, and that I'm more resilient than I'd ever dreamed I could be.

On a bad day, I feel my "frienemy's" eye-rolls as I read off the names of friends and lovers, actual and potential, whether they're lost in fact to MG's presence, or their possibility is avoided because MG won't leave me alone. I think of the career I could have, straining my eyes to see the distant horizons of travel that will not happen.

On a good day, MG pulls out a chair and says, "Let's talk, girlfriend. Which of those actual friends and lovers, and especially that last ex ... WHOO-WHEE ... was worth even 1/3 of what you poured into the relationship? You know, you'd probably still be with that last one if it wasn't for me!" And I sincerely say thank you, tears of gratitude in my eyes. The relationships past taught me the lessons I needed. The people that really matter are still with me. On a good day, I see more clearly, and realize that those potential relationships I choose not to pursue because of the constant companionship of MG are ones I *choose * to avoid. That's not on MG, that's on me.

On a good day, I can be objective. I can realize that, though I'd actually really like the career, and really love the travel, my "frienemy " has allowed me the time to explore different avenues more completely. My MG has allowed me the chance to spend more time painting, and has taught me, through necessity, new techniques. And while I no longer have the rush and bustle of airports or long winding foot-rambles through new lanes, byways and thoroughfares, I can go so many more places, experience not only new and exotic locations, but live a multitude of entire lives through books.

In all, as with most close companionships, there are good times and bad; times when I rage and kick at the stalls, and times when I can sit in peaceful contemplation ... and even in happiness. I know that sounds totally at odds with having a chronic illness, and I wouldn't ask for it, or wish it on someone; but:

If I live my life each day, each moment ... as a parenthesis in eternity, rather than as a comparison to others (including the "was-me") ... then it's a life that still has joy, still has meaning, and is still worth living. I did not chose Myasthenia as my companion, but it has taught me how to be my own companion, and my own best friend.

MG has taught me that:

The purpose of the journey IS the journey, not the destination.

It's okay to not always be okay, as long as you don't live there.

Needing help isn't a weakness, asking for help is courageous and accepting help when its offered is a tremendous strength.

We need to practice the same patience with ourselves that we automatically give to others.

Learning to let go of the *was* and live in the *is* is the only way to successfully move into not just the inevitable *will be*, but the infinite possibility of *can be*.

Learning to love ourselves and know ourselves as SO MUCH MORE than the body we inhabit is the pathway to truly loving others, and is the purpose of our existence.

Hi, my name is jennysjack68. I'm here because I have Myasthenia Gravis and Sjogrens syndrome and I would love to have other people in my life who are living with chronic illness and understand me and my life. I want to gain strength in numbers.

#MightyTogether

As I lie here in the hospital, slowly working towards recovery from this exasperation, I am creating cards as part of my mindset activities. These cards will be given to the medical staff caring for me!

What is it you do to remain engaged while recovering from those pesky exasperations!

#mgstrong

Gracious, 2022 is starting off with a bang. I was diagnosed with Myasthenia Gravis in January after reporting symptoms, and I told my doctors (Neurologist and Rheumatologist) of new symptoms progressing fast. A variety of symptoms that didnt seem related to any one thing but they’re there. After I got the Myasthenia Gravis diagnosis more of the labs came back and holy crap, it’s positive for Smith (Lupus), Ana Titer Pattern and Rheumatoid Arthritis.

After getting released from the hospital for the second time in 30 days for treatment of difficulty breathing swallowing and leg and arm weakness, my Neurologist and Rheumatologist referred me to a specialist and everyone is waiting on his test they assume he will do after our consultation which will be another 2 months out. As I’m waiting and reporting leg weakness that’s so bad despite the pyridostigme and prednisone I can’t stand or walk for more than 15 minutes tops, they’re telling me to relax. I ask how I’m supposed to get around, be a Mom and go to the zoo, be a wife and do dishes or cook, and they tell me to get someone to help me with it.

I understand the need for an accurate diagnosis before taking a big medication step like a big immunosuppressant, but am I being unreasonable by asking my Rheumatologist to at least look into the Mixed Connective Tissue Disease possibility in the interim? Because she’s holding off on everything entirely until the specialists nerve conduction test comes back.

#MyastheniaGravis #soliris
I am starting with the induction phase of Soliris on Wednesday. Does anyone have any experience with these first 5 weeks? Recommends or thoughts?

I was diagnosed about a month ago and it’s been surreal. I have fibromyalgia so the gradual increase in fatigue going upstairs over a month was dismissed. But after that month I was tired every single time I walked up 13 steps, even going very slowly. Then I’d get to the top of the steps and had to sit down before my legs gave out, literally. Every single time up the stairs, it didn’t matter if it was a trip once a day.

On top of that new weakness, I was having that same feeling standing doing dishes. My legs wouldn’t hold me up after just a few minutes.

You know when you’re in high school and you’re training for track & field (shotput and discus in my case) and you’re taking a weight and doing it until that muscle set won’t lift it any longer and it’s rubbery and shaky and won’t work right no matter how hard you try and you’re laughing because it’s funny at that age? That’s mine, in my legs, in my everything if I really push it.

My neurologist thought it was a long shot but tested me for myasthenia gravis by blood and nerve conduction test. Positive on both measures, this is definitely it. What was odd was my Ana, rheumatoid arthritis and smith blood tests came back positive too and those were all negative last year. (For those of you that don’t know, fibromyalgia is a constant barrage of trying to figure out what is a symptom of your fibro manifesting itself in some new fun way versus a symptom of autoimmune issues or cancer)

At that point the weakness was in my legs, and one day it was in my arms and I started to have trouble catching my breath. My doctor told me to go to the emergency room and that’s when I got more treatment. I also noticed my right eye was drooping a bit. I can’t raise my right eyebrow or get the right side of my smile to match perfectly but it’s not too bad. But for anybody wondering what it starts out like or feels like, that’s how mine did. #MyastheniaGravis

Just a vent here. A close family friend is having a large indoor gathering, and is aware I’m now immunicompromised, and is making the party mask free. It was stated they would understand if anyone opted out because of concern due to the mask free environment. How understanding.

Over a decade of close friendship, and rather than politely ask others to mask up so I can come too, I’m sidelined in public and private.

I guess you really find out who your friends are when you’re immunocompromised.

I look forward to finding the friends who are more compassionate and understanding and consider the safety of others to foster a more inclusive environment. I’ll find them. I know it.

I’m new here though I’ve been reading what I can sometimes as a visitor until now. I had all come on me all of a sudden first arms then days days later legs were so weak I was nearly crawling down the hall. I’ve come a great deal along in almost 7 years with the help of Naturopathic doctor. The Neurologist I saw had me tested for Myasthenia gravis Which I didn’t have and so many other things I don’t have. The ND only one seeing anything one tests. Days like today make me wonder though. I’m dealing with Chronic illness and the wind outside is knocking my body down while I’m inside the house. I’ve spent most of the day on the couch most laying down and the accompanying brain fog even with products in me. I’ve spent some of it crying, which lead me to sign up here. I’m sure many here can relate. I’m fairly newly diagnosed with fibromyalgia, I also get chronic fatigue with it. Test also have shown Heavy Metal Toxicity. Also have ADD challenges which makes deal with the rest harder. I’m hoping to have a visitor today that maybe willing to help me prepare some protein for easier throw together meals these next couple of windy days. I’m trying to get some healthful helpful food in me. #Fibromyalgia #heavy Metal Toxcity #chronic Fatigue ADHD/ADD

I’ve had new symptoms that are due in part to myasthenia gravis, and in the bloodwork rheumatoid arthritis and lupus markers were found. I’m now waiting on a myositis blood panel, nerve conduction test, and possible muscle biopsy. There’s a special kind of fatigue making appointments with various specialists, getting blood drawn, another follow up with someone else, making appointments to go over those, etc. I completely and totally understand why they do all this, because if they can figure out exactly what I have going on, we’re all going to be better off with targeted treatment. But OH MY GOODNESS the wait. Then more waiting. And these poor overworked health care physicians and nurses and the whole healthcare system. I’m conflicted because I want them to find something to help them help me, but I’m afraid of what that something is. I look forward to confronting whatever this is so I can try to manage it best I can. #Fibromyalgia #MyastheniaGravis #Myositis #rheumatoid #Lupus