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...
First just wondering if any others are experiencing problems with the site? I haven't bee able to get on for the longest time!
As you all know I have been having a really rough time for the past 12 years with my extremely refractory MG! Last year I spent a total of almost 9 months in hospital in respirtory failure and it was hell!
I had received cyclophos chemotherapy once a month for about a year 8 years ago without any response. However because my Prof had worked through all the avalable treatments for MG and it seemed obvious to her that I wasn't going to make it, she offered me another try at cyclophos as a last resort. I went into it very afraid and feeling pretty hopeless as you might imagine having been told outright my very poor prognosis. I have now had about 8 treatments at 2 or 3 weekly intervals interspersed with PLEX's as needed. The fabulous news is that although the treatments have been really hard to tolerate it seems that they are beginning to help some! I have been out of hospital for 10 weeks now which is a record for the last 3 years! This is not to say I'm symtom free, I am in fact back in resp failure and am being admitted 2moro for more PLEX and monitoring but I go in with renewed hope that things are at least improving and I can be brave enough to dare to dream again!
I am writing this to tell you all to never give up fighting. It may even be worthwhile retrying treatments u've tried unsuccessfully before.In my case tweaking the dose,reducing the interval between doses and using multiple modalitis has started to show improvement when it seemed I had little chance of surviving another year. Also just to say that if the chemo can help me even just a little I am sure it can help others out there. I know it's a scary option to contemplate but it is temporary and if it works it is certainly worth it for those who are refractory to all other treatments. Just wanted to share with you all. Wishing everyone out there strength and love Ange
As you all know I have been having a really rough time for the past 12 years with my extremely refractory MG! Last year I spent a total of almost 9 months in hospital in respirtory failure and it was hell!
I had received cyclophos chemotherapy once a month for about a year 8 years ago without any response. However because my Prof had worked through all the avalable treatments for MG and it seemed obvious to her that I wasn't going to make it, she offered me another try at cyclophos as a last resort. I went into it very afraid and feeling pretty hopeless as you might imagine having been told outright my very poor prognosis. I have now had about 8 treatments at 2 or 3 weekly intervals interspersed with PLEX's as needed. The fabulous news is that although the treatments have been really hard to tolerate it seems that they are beginning to help some! I have been out of hospital for 10 weeks now which is a record for the last 3 years! This is not to say I'm symtom free, I am in fact back in resp failure and am being admitted 2moro for more PLEX and monitoring but I go in with renewed hope that things are at least improving and I can be brave enough to dare to dream again!
I am writing this to tell you all to never give up fighting. It may even be worthwhile retrying treatments u've tried unsuccessfully before.In my case tweaking the dose,reducing the interval between doses and using multiple modalitis has started to show improvement when it seemed I had little chance of surviving another year. Also just to say that if the chemo can help me even just a little I am sure it can help others out there. I know it's a scary option to contemplate but it is temporary and if it works it is certainly worth it for those who are refractory to all other treatments. Just wanted to share with you all. Wishing everyone out there strength and love Ange
My neuro is talking about Rituxan now for me. It is supposed to be very well tolerated. Have you tried that? That is also for refractory MG. They think it would have the additional benefit of helping my progressive and fluctuating hearing loss.
Good to know that something can be tweaked to potentially change everything.
You have the most amazing spirit, my friend.
What an inspiration...debra
I have missed you. The site has not been working right for so many people, but mostly notifications and activity feeds. I am so sorry you couldn't get on at all!
Good to know that you are still there plugging (as I always read your moniker). Thanks for letting us know what is going on and encouraging the rest of us in our quest for better health, even as you battle through day by day. It is so uplifting that something is working for you, even if imperfectly, and send hope that with more PLEX and plugging, the cyclophosphamide will carry you through.
b.
Annette
Another Deb
You are an inspiration to us all.....to keep plugging along however we can and to never give up on finding and fighting for the right treatment(s).
Hoping your new treatment plan does the trick for you.
hugs
sherry
Glad you could make it back!
Best of luck going forward. Let's get those success stories going, people!
TJ
This will sound kinda funny.
But, you!
You! - are one of the strongest people - I have ever met!
Strength is not measured - in just a purely physical sense.
Strength - can also be measured?
In the heart - in the mind - and in the soul!
I thought - I was tough? Compared to you?
I feel like a toddler, just learning the very first steps.
In fact, most days?
That's exactly - what I do look like!
But I will try harder, now. Very much harder!
Thank You - for your Wonderful Story!
Here's to: 11-weeks!
And then 12, and then 13 - and on 'til dawn!
With great respect - Ross
Let us know how you are when you can. We will be waitning.
Love,
Cathi
You are such a strong person I feel guilty complaining about my symptoms which are mild compared with you.
As Debra said you have an amazing spirit.
Marvin
Cathy
Love Theresa