MG Progressing- my neuro wants to look further
 

:confused:
Hi All,

My one year milestone of diagnosis is quickly approaching (late Feb)-Anyway, I went to see my new Neurologist last week. (My previous neuro relocated) My symptoms seem to be getting worse (increased fatigue, on & off drooping eyelids & double vision, muscle weakness in my legs). The Dr. is concerned about the progression of symptoms & is feeling that the MG is no longer occular, but possibly generalizing. He sent me for a chest CAT to check my thymus. (i hope to get results Tues.) He has also talked about IVIG treatments as a possbile option for me. I am currently taking mestinon (3x / day) & only use prednisone when I am having "an episode." Steroids are not an option for me for ongoing treatment because of my complicated med. history. I am trying to be positive, but am really struggling! I just had a complete hysterectomy in Oct. 06. I am the mother of two young boys, a wife, and a full-time teacher. I just cannot face another surgery. I don't mean to "dump" here, but it's hard to find people that really understand. Anyway, any insight or feedback from others facing this terrible illness/ disability & all that goes w/ it, is greatly appreciated. I hope you all are doing well. Peace.

Nancy Lee

Hi Nancy Lee,
this is the perfect place to "dump", because we all know what you are going through, and can give you support while you are having a bad time.
I know at times I've sat writing while I was crying and always got a few good replies that helped!! So please feel free, its good to vent.

I cant begin to imagine what its like to have children a job and MG, I can barely cope somedays with just myself and my dog!! and even at 35, still have to ask my Mum for help.
I can understand you not wanting to face another surgery, especially with 2 young boys!!!
Have they suggested any other forms of medication? and does the mestinon work?
You take care, and keep us up to date, and feel free to talk, it does us all good to get things off our chest.
take care
redtail

I just had the full hyst a while ago too and know it is a whopper of a surgery. I also cannot take steroids due to my medical history - mine is cushing's disease. I was already disabled when I got hit with this and it does seem overwhelming. I don't know how you can do it with kids and a job! Kudos to you! Feel free to dump away as we understand.
It is auto-immune as well, so if you have one, you tend to get others...

Hi Redtail,

I wanted to say thanks for your post. I also wanted to tell you that I went back to my neuro & he sent me for another CT scan-to check my thymus. I am glad to say that he says it all looks good!!!! So I will continue w/ mestinon & supplement prednisone, as needed. I will go back in May. There is a possibility we may explore IVIG. I will try to have hope & faith & take it as it comes.

Nancy Lee

Hi Rumpled,
Thanks for your reply. It really does help to communicate w/ people that get it. Although my family, friends, co-workers try, they just do not understand. I went back to neuro & after getting a CT scan to check my thymus-he says it looks good. I am encouraged by this news. I will continue w/ mestinon & supplement w/ prednisone, as needed. I will go back in May. We may explore IVIG. I will keep the faith & hope I will be fine. Thanks again for your encouraging words. I hope this reply finds you well in mind, body, and spirit.

Nancy Lee

If you are "complicated", be careful with the IVIG. I had a bad reaction to it - I got aspetic meningitis. Make sure they are monitoring you carefully.
I think my next step is plasmapherisis but I am waiting on my next appointment. I have to find something that helps me without dire side effects.
Good luck Nancy Lee!

Hi Rumpled,
Plasmapheresis is not a long term treatment, it helps overcome a crisis and acts after 3 to 10 days and up to 6 weeks but it doesn't work for about 20 % of the patients.
If you need that kind of treatment, try to show your vein condition to the team who would perform the plasma exchanges in order to avoid any unnecessary surgery (like SHELDON for ex).
Maurice.