Something I Didn't Know
Saw my neuro yesterday. Had decided that when I saw him I wasn't going to start any new meds. Told my husband I don't want these poisons, they scare me. Well going with my mind set he asked how I was doing. Doing ok a little weaker some days. If I do to much one day I pay for it for a few days, but over all not bad enough for anything other than mestinon. He said that is fine, BUT with my antibody test being 1000 times higher than normal & more symptoms than last time he wants to at least have me start immune suppressing drug. Then to sell this point, he tells us that by being on mestinon alone there is nothing to stop the progression. That eventually the muscle will be destroyed & then there is nothing but weakness. So I guess I will be trying cellcept. This is something I have not been told before. So damn if I do or not. Still have to pick prescription up, procrastinating.
Replies
So sorry. :-( it seems like we are always choosing the least bad, rather than the best, options.
\'Sorry, Debbie! When MG was first mentioned to me, I was determined not to take even Mestinon. Shortly after my diagnosis, I was begging for more aggressive treatment. Now, I have had to back down from Mestinon and Imuran and I now have holistic treatments that I think are helping the most. Hopefully the Cell center will help! When I learn more about my holistic treatments, I will post more info in a journal entry. All the best! Rosie
Thank you Elinora & Rosie. Feeling out of control of my life again. I\'m a planner. Like to know all my ducks are in a row & they are wandering away. I have a friend who\'s husband is going in for cancer surgery this next week & I promised to be there for her. With starting this not sure how it will effect me.
Debbie, I am so sorry that we get a disease that turns all planning on its head. If your disease is progressing, you definitely need more treatment. Try to take out your planning needs by reading up on MG and treatment, it helps give us at least some illusion of control and can be productive :-) We are sufficiently different and the disease sufficiently rare that it is not a one treatment fits all situation, so the most we can know, the better off we are. b.
I pray that the cell cept and mestinon improve your your MG. I started cellcept in January. and when I was discharge from hospital my today
Ignore the first one. I don\'t know what happen. as I was saying When I was discharge today my doctor took me off cell cept. Stay on your meds. Check-out my Journal. God bless!Cabbage7
Debbie,
There comes a time when we know we cannot go on on just Mestinon alone.
Part of one of my muscles had atrophied and I didn\'t want this to happen to my others.I have just started on Imuran and am aware of all the side effects particularly having had cancer twice but it is quality of life I am aiming for .
All the best,
Lorraine
B. thank you. I have been in remission for the last 25 years & things I thought I knew have changed. Mestinon & neostigmine was the only meds I knew about. No one ever said your muscles can be damaged beyond repair & you may need to take poison for the rest of your life to stop that. I guess I\'m feeling sorry for myself.
Cabbage7. I am sorry you had a rough time. I remember those days, even after this many years they are still fresh in my mind. My husband worked nights & I would choke on my pill & I couldn\'t get to the phone to call. After a few of those times I stayed at my grandmothers.
Lorraine. I didn\'t know this. I thought I have already had a thymectomy & a CT scan confirmed it hasn\'t grown back. So I thought the mestinon would be enough. When I was diagnosed I was told that 1 in 400,000 get this. So I have always thought that I was that 1, so I\'m not a risk taker.
Thanks for the encouragement.
It\'s so encouraging that you had a 25 year remission! Wow. I understand how you feel. I\'m a planner too.. A financial planner, so my ducks always have to be in a row and counted! I hated the idea of taking one pill. But, the alternative-- was worse. The idea of ivig infusions and immune suppressing drugs. The poison I refused was prednisone. What I keep telling myself, is that science is still far away from figuring out MG, but in the meantime, Mestinon, ivig, and cellcept, are keeping me alive. I wish for you another remission.. You did it once, you know it\'s possible!
Be well,
Good luck Debbie. It\'s not easy making these decisions. Gez