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...
So I have been informed by my spouse that all the information he has read says that people who are treated... go on to live normal lives... perhaps that is true.. but.... i was diagnosed in December, have not had a "good day" in weeks, my voice slurs, my vision is off.. basically i am so.. "not myself" .....I had to take several extended business trips by myself which caused me to be more scared than i have ever been. Granted, nothing major happened during those trips but the distance from home and the fact that i spent most of my days pretending i am ok because its work and they pay me right?That is really is exhausting..... Having MG is not only the most awkwardly uncomfortable thing thats ever happened to me, i am also finding it very lonely. The muscle issues, the mystery drugs that might work, might not work, all depends... that stuff i can deal with but... the fact that my spouse wants me to "send him links to where all this gloom and doom is" really is annoying. All he needs to do is look at me and see the gloom and doom. For a master computer guy he cant see that this disease is ruining his wife???? Is this the new life i have to look forward to? I suppose I will need to put on my big girl pants and find a way to trudge forward without the understanding support of my family, clearly they dont get how Crappy this thing makes you feel. I know it gets old to hear about but when you are sickly, which lets face it is how MG makes me feel, its kind of like the only thing going on in the world.... I cant focus on much else and when i reach out for help, although I will admit to being more than difficult on occasion, the reality is, no one knows how this side of the coin feels and if they care... well thats another post.. but to say.. people lead normal lives.. perhaps they do.. but so far this chick has not had the privilege....
thanks for listening to my rant...
thanks for listening to my rant...
Has your husband come to the neuro with you? In my case, my husband is very helpful and understanding, but even so, he really seemed to only "get it" when he attended one of my appointments with me and saw the concern my neuro had about how badly my symptoms were doing.
I agree with Seattle about having your spouse accompany you to your next Neuro visit. Having his understanding, full understanding, would be priceless.
I don't mean to be in any way 'down' about this. My vision and swallowing problems are under fair control now and I am grateful for that. We know what our normal was and I think reading that we will return to it delays our acceptance of being unwell. Part of me still thinks I will wake up one morning and be normal! Mostly I am trying to fit my life around MG, it is the boss, but I am trying very hard to work with it now. Like you said, it can feel like the only thing going on in your world and that is because it cannot be ignored but must now be incorporated into our new reality.
I do understand your frustration and hope so much that you can get your husband on board with your struggle. May you have better days ahead. Big hugs.
So understand, what is normal.. As I sit here with my back muscles hurting cause I am sitting up , and my eyes are getting worse as I try and read the posts. It is hard for people looking in. My husband is now my biggest advocate since going to a few appts and the best thing was going to the Mgfa conference. He gained so much information and helped him talk to others.
Maybe y'all can go to the conference this year or find a local support group.
Good luck and hugs from Texas... We will all be normal together.. Lol
Annette
You do have us.....I hope we can get as much comfort from this group as I did in the beginning.
Where did you husband get this article? Normal life?????Who wrote it. I really would find that.
He is in denial. Of course he doesn't want this for you or himself. If you were to change ...and be normal....he wouldn't have to have with any of it.
I think I was blessed by being on a respirator for about 4 weeks.
My family saw how serious this is. I don't want that for you but I do think that is why my family takes me so serious.
Yes, you feel lonely because you are dealing with this MG by yourself while your husband takes the easy way out of denial.
The only action I would recommend is that he read a few profiles....mine may help him to come a bit more into reality.
This is his weakness and lack of knowledge at this point. Also his fear of not knowing how to help you. Reading some of these posts and profiles may be a start.
Take care
Ann
Reading your post is like deja vu all over again for me as I dealt with the almost same situation with my wife back in 2000 when i was diagnosed. Seattle is spot on with your husband go to the neuro with you as thats how I started with my wife , it worked.
As far as " normal " is well , I can't tell you how many times at work my coworkers would say you "look fine there must be nothing wrong" As Ann said quite nicely its a lack of knowledge and trust me when i tell you I took the time often to explain mg and it was and still is quite frustrating.
My wife has become my biggest advocate and Id be lost without her , it took sometime but I'm certain your husband will be there for you in every way.
As Arniebb2 stated about acceptance that is so true and well said as that word has such a strong meeting it applies to not just mg , but so many other things in our lives.
Knowledge is power , as txkiki husband has learned about mg as my wife has so don't worry your life will be "normal " soon.
Be well ..Cj
It's been 4 years since I was diagnosed with mg, and I have more good days than bad. I have gone thru a long list of different treatment that never really controlled my symptoms. I now have ivig every 8 weeks and that has been working pretty well for me. I have mostly "good days", which means I can work, exercise ,travel, enjoy friends and family. But not with out planning. RE: long day at work- come home and crash. Half day at work- time at the gym/nap/ dinner with friends. Travel- making sure it's at least 7 days after my ivig and no longer than 6 weeks after. ( my "good" period) None of my days are like before dx. but some come close. And even when I'm feeling well, something as simple as a UTI can send me into a crisis.
But my neuro insists this is not "good enough" and stresses there are still other treatment to try and new treatments on the horizon. There is hope for remission and better days ahead.
It would be great if your husband could go to a support group or convention with you. Mg is pretty rare and often misunderstood even by drs. My first neuro only had treated 3 people with mg. When I asked him why there was no support group in RI he responded" Because every one gets better, so you don't need support. Luckily I changed neuros
Judith.
Anyways, I appreciate everyones insight. I have a neuro appointment tomorrow, he wont be going... whatever... but as with all appointments i go in hopeful that there will be some miracle cure ... ya never know right?
Just got out of bed at the early hour of 10 am... whooo hooo!! Good news is I am relatively well rested, so lets see if we can "fake it til we make it" for a while longer today so everyone around us isnt made to feel uncomfortable... thats kind of how it is right?
Again, thanks for helping me ... xoxo
Maureen
There is even one rare lady who has been in remission for 20 yrs!! However I have been fighting this for 5 yrs (diagnosed 2 1/2 yrs ago). i have gotten weaker and the meds caused major complications causing me to be in hosp 5 times and had 2 surgeries!!
i am sure all of us here are soo tired of hearing" but at least you good" They don't know all the effort and pain that goes into "looking good". and all the rest needed aftterward too. lol Even the simplest of things wear me down, my muscles hurt esp in upper arms, thighs and hips.
Also it never fails when I go to my neuro, my strength is pretty good because I don't do much before the appt.(so i can make it there and back) and I usually have to sit an hour in offic before I see her. Fortunately she understands and goes by what i say and not just by how I test in front of her.
So I stop rambling... in the support group 85% do NOT live "normal" lives...we struggle.
Now that I have read this, I see that another new 'normal' is full of emotional ups and downs, I am, I see, on a down.guess I just needed to vent. Thanks for the opportunity. Deb
Now that is one secret I only share with people who truly understand.
Laughing with us can sometimes make it a bit easier.
Hope you enjoy your evening.
Ann
I do know laughter helps.
I turn 60 in a couple days and all I want to do is cry. Unmet dreams....but much much to be thankful for.
We can be thankful it is us who is sick vs someone we love.
For me, having MG was a great thing, because before my diagnosis the doctors told me that MG was unlikely and it was most likely a brain tumor or stroke that was causing my double vision and droopy eyelids. So when I got the MG diagnosis (based on a simple ice pack test!) I admit I cheered a little. So I always had that perspective--I may be absurdly weak and taking 14 pills a day but at least it's not a brain tumor!
But, honestly, the first months were terrible, I had a thymoma removed, but by the next summer (and some IVIG) I was feeling pretty good. You go from "refractory" to "remission" with MG-- but you always have it.
My Neuro had me take my wife along to an early office visit, to make sure she understood the gravity of the illness. Maybe your husband can go along with you to one of yours -- you will have plenty of opportunities! Take it easy and stay out of the heat! ~Joe
I feel your pain as i as all the others who suffer have not picked up my pliers and put on my tool belt and dealt with the stress as being a productive , efficient worker.
It goes on and on especially when there is so little acknowledgment from people who are in a position with a few acts of kindness that could make a difference in our struggle.