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
So sorry to hear your two year old has MG. That is truly unfair.
Cathi
Ross you write so beautifully! I was especially touched by your reply! Ever thought of writing a book? Cathi thanks for answering Emma and anticipating my absence you are a wonderful friend!!
Hi Emma! Lovely to meet you and so sorry to hear about your little one!! I for one am praying that you never need to learn the meaning of refractory. Just for now, forgetI ever mentioned it! How is your babydoing? So tough on you and my prayers are for strength so that you can enjoy your little one!!!
Just to keep you all updated, I have been in ICU again in crisis for the last month. I developed sepsis and things spun completely out of control but I am finally out of hospital again and slowly gaining strength. The positive I have lost loads of weight and fit into my old wardrobe again (yay, every girls dream lol), the negative mmmm.... with the weight went the muscles so I must start the climb to the top all over again!
I was worried this severe setback would mean the cyclophos had failed but my neuro assures me it's just another rock in my path and that we would tweek doses and press on. So I go for more chemo on wednesday and will keep plugging away as B calls it! I must say I am feeling rather a weary warrior at the moment! Shell-shocked and wounded but grateful to be alive!
So delighted to be back amongst you guys and sending you all a big South African hug!
Ange
So good to hear from you and that you are doing better, I know it has been a very hard time for you. We all have had you in prayers, and will continue to do so. Again, you are a superwarrior.......Take each day as it comes, which is all we are supposed to do, I have to remind myselft of that.
hugs from Texas,
Annette