Hi Everyone!

I know it's been a long time since I've checked in-life has been so hectic. Anway, I went back to the neuro-not the news I was hoping for. He is sending me back in for IVIG, probably a day or so after Christmas. I know that many of you have gone through this. I went through my 1st round in July & had AN UNBEARABLE EXPERIENCE!!! I ended up w/ acute aspectic meingitis & spent 5 days in ICU to treat the pain & watch for additional reactions. After that, my Neuro & I agreed NEVER AGAIN! However, I guess one can never say never. Right? I was doing very well once I got over the meningitis. (but the MG symptoms came back-after almost 4 months of feeling great) So, clearly the IVIG worked. I cannot take steroids- I have alot of bad side effects & my Gyn said NO STEROIDS! This is because I already have arthritis in my back-due to a spinal fusion 19 years ago & a complete hysterectomy 2 years ago. Just too risky. So, we agreed to try IVIG one more time. This time a lower dosage, spread out over a few days, rather thatn in 3 consecutive days. He is also saying I will probably need to start cellcept. I am soooooo upset about this whole situation. I have 2 young sons (ages 8 & 5) & they have seen me suffer more than any children should ever have to see. I know I will be ok, but I just wish it wasn't sooooo hard. I am trying to teach, be a mom, and a wife (although my marriage @ this point is not very good -for a variety of reasons).

Sorry for going on & on, but you have all been such a great source to me. I hope & pray that you all have a beautiful holiday & great health in 2009!!!

Peace,
Nancy Lee

Hi Nancy Lee,

good to hear from you.
Wow, yep I've had IVIG, but have always breezed through it, so I can understand you being a bit worried!!

Its sounds like you are having a stressful time at the moment, I think working being a mum and wife is enough without having this disease as well!! I just have me to worry about, and sometimes thats hard enough.

I hope things improve for you, take care and let us know whats happening with the ivig.

take care
redtail

Hello Nancy Lee!

I am so sorry to hear you are having to go through that - it is a real bummer..............Has your doc talked to you about the plasma exchange? It was awful for me, cuz' I hate needles, but if the IV IG makes you that sick you may want to check it out........Don't get me wrong, it is not a pleasureable experience, but it's prolly better than the other........

I'm sorry to hear about the other, too. I can't imagine what you are going through right now, but will be happy to LISTEN anytime!

Hang in there!
ERin

Thanks Redtail! I feel blessed to know you guys are there & really get it.
Nancy Lee

Thanks Erin. I appreciate your kind words & suggestions!

Nancy Lee