Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Pity party for one

Elle114
Elle114
For those that saw my rant discussion yesterday this won't surprise you but now I've moved onto pity and denial. It's 3:25 am and I've been up for hours, the last thing I need. But I was so wiped out when I got home from work, I didn't do anything but sit all evening. Sit and stare with this stupid droopy eye and flatten cheeks. i look like the human equivalent of an old basset hound.

Today is my follow-up with neuro since my MG diagnoses. Guess it is on my mind more than I even realized. I keep thinking there must be some mistake, there must be another explanation....maybe hormones, or thyroid, or something. I seriously feel like walking in there and throwing my best toddler tantrum that he must be wrong about this MG. i don't want it, any of it.

I know it must sound insensitive to those who have been trying for a long time to get a MG diagnosis and please believe I don't mean to. It's just it happen kind of fast for me and I don't feel like every alternative possible causes were ruled out. In addition the one blood test was negative. It just seems "unclear" to me, maybe it is denial. I hope he orders more blood test today.

I have two hours before I have to get up for work, can barely hold my head or eye up any longer. Hopefully tomorrow ( or later today actually) will go better. :)
txkiki53
txkiki53
Oh so can relate, I have had my pity parties as many of us. It is ok, as after diagnosis is a process. At first mg was on my every waking non waking thought then finally after 6 months or so one day I said wow this is what I have , get over it... So I laugh at myself, cry and have minute pity parties, main thing I have found for me is to not let them laugh.

Hang in there you really have come to a great place, wonderful help and friends you will find.
Annette
Cj416
Cj416
I know exactly how you feel Elle as when I was dx , not only didn't I ever hear of Mg this couldn't be happening to me. There was a a fair amount of Denial before the Acceptance aspect became a reality.

Patience is a virtue with us Mgers , easier said than done I know but there is hope and you will have better days ahead, yes you will.

Cj
annkemp
annkemp
This disease is a hard pill to swallow.
Throw it in the Trash.
It is very hard.
I hope you get a ray of sunshine today.
Ann
MGOhio
MGOhio
It comes on fast for most of us, even though their are some that have been undiagnosed for years.

IT WILL GET BETTER.

Work with your Neuro to find a treatment plan that works for YOU. Find another Neuro if you're not satisfied with the one you have.

Getting upset is certainly understandable and a part of the grieving process, but may only make you feel worse.

Take Care.
deleted_user
deleted_user
hi there! So sorry you are going thru all this..As all have said we all can relate, most of us had never even heard of MG and I still cant spell it, ha. Anyway go to neuro today and get that treatment plan started asap.....That will definately help..Thats first thing I did was get that going as soon as I could.....Sounds as though you have good support there, they may not always understand but they will love and support you no matter what Im sure....I here have noone really, all my family is gone except my sister who lives 2000 miles away..She is my biggest supporter but dont get to see her much..My boyfriend is NO support and doesnt understand at all and most of my so called friends have pretty much deserted me...Thats why I feel so blessed to have found this group/family..They are my rock and support now....So we are all here for you always.....Things WILL improve..Not saying there wont be ups and downs but it will be better...Good luck today and keep us posted......As Ann said this MG is a hard pill to swallow but getting upset definately aggravates condition, take it from me, so hang in there...Lottsa Hugs
Barbel
Barbel
I agree with the others. As soon as you get a treatment plan, the better. It takes time - but it will get better.
We have all had down times and pity parties. We are here for you.

I have been on treatment now for almost two years and I have more good days than bad, although, I am learning how to listen to my body.

Good luck today. BIG HUG!

Barbel
bweeds
bweeds
Elle,
We don't hold pity parties online alone. Everyone is invited. We stay up until we fall down and entertain each other with the MG shuffle--no matter what music is playing. Play games like pin the tail on the neuro and limbo. Eat cake and ice cream and muffins and chocolate and forbidden fruit and drink all sort of forbidden drinks ( its all virtual, you know ) we come as we are in jammies or want to be in high heels or disguised as pirates (obviously) or Darth Vader with our BiPaPs (halloween is our best time, we don't stick out so much). Crying is totally acceptable.

But if it is MG for you, you fit the description of those most likely to experience remission and certainly marked improvement with proper treatment--and you will still be welcome at the pity party. Here the emphasis is on party. It's tough--hugs at the door. b
Rankin
Rankin
You are entitled to your pity parties. I have them all the time watching my son go through what he does. It's horrible and nothing I would wish upon any parent. I was in your shoes thinking it must be a mistake or something else. You'll get past all of that and you'll accept your diagnosis and you'll educate yourself and then you'll get treatment and see progress. It's difficult, but I have a friend who is doing quite well so he keeps me hopeful. He meets with my son and encourages him. It's awesome. Best wishes to you. Keep your spirits up.