[nancylee]

Hey to my MG Friends,

I just wanted to update evryone. I went in for my IVIG. As I reported earlier, I had an awful experience last time (I ended up w/ menengitis & in the hospital for 5 days w/ the WORST PAIN) But. I went in for treatments-a lower doseage, and spread out over several days, with rest/days off in between. I had some pain, headaches, leg fatigue, but overall it was manageable. I am sooooo relieved it is over as I was scared and even my neuro had some reservations, but it looks like it worked!!!!! After my last round, once I was over the menegitis, I was symptom free for nearly 4 months!!!! (A record for me).

I just thought some good news was something woth sharing. Thanks for your prayers & well wishes!!

Peace & good health to you all in this new year!

Nancy Lee:

[MissyGirl]

That's very good news. It's amazing how much the rate of the infusion will affect how you react to it. NOW the trick will be to convince the staff in the future that you need to continue to run it slowly. Lots of folks have trouble with that.

Hope you have a good long run of feeling good.

Missy

[erinhermes]

Hey there! I am sooooo happy to hear that!!!!!

Now if we could only go into remission..........hm................

Erin

Originally Posted by nancylee

Hey to my MG Friends,

I just wanted to update evryone. I went in for my IVIG. As I reported earlier, I had an awful experience last time (I ended up w/ menengitis & in the hospital for 5 days w/ the WORST PAIN) But. I went in for treatments-a lower doseage, and spread out over several days, with rest/days off in between. I had some pain, headaches, leg fatigue, but overall it was manageable. I am sooooo relieved it is over as I was scared and even my neuro had some reservations, but it looks like it worked!!!!! After my last round, once I was over the menegitis, I was symptom free for nearly 4 months!!!! (A record for me).

I just thought some good news was something woth sharing. Thanks for your prayers & well wishes!!

Peace & good health to you all in this new year!

Nancy Lee:

[kpearl]

Missy and Erin, I'm glad to hear that you both came through your IVIG ok. I would like to know for how long the effects of having this procedure last, and do you feel almost normal, or are your MG symptoms just more manageable.
I ask this since I've only been diagnosed just a short time now, I have alot to learn. I see my neuro later this month and I am making a list of questions. I tell ya, some days I don't know how to manage. I'm afraid to go anywhere in case I have another crisis. I travel to Florida every March with my husband and friends, and I'm afraid to go. I live in Canada and I don't know if my travel insurance will cover me for a pre-existing condition if I happen to run into trouble. I',m afraid to just go out for an evening with friends, I might choke on my dinner, or worse not be able to breath. This has certainly put a damper on my lifestyle, and I feel like I'm punishing my husband. We went out New Years Eve, I didn't drink, I certainly didn't dance, I'm becoming a real stick in the mud. If you haven't noticed, I'm feeling a little sorry for myself, and I apologize. But to get back to IVIG's. Does your blood work have to be positive to warrant this procedure, my blood work was normal.

[erinhermes]

Hey there! IV IG makes me feel amazing! After my last big dose, I was able to decorate my home for xmas, go on a cruise and host a business party for my hubby...........I felt like normal! The results usually last me about 3-4 weeks, during which I am so happy!

I am now in for the plasma exchange - not as pleasant, but longer lasting effects for me - last time I had it was July 31. Much more invasive, but I am finally starting to feel the effects after only 3 treatments......

Some people have kind of funny responses to IV IG - they just don't tolerate it as well, while others breeze through it - no problem!

I know what you mean about being worried. When I first had my thymectomy, I couldn't be alone @ all....It was miserable! After talking with my GP and neuro I started taking Paxil - it was wonderful!

You may want to ask your docs about it and see what they think......

I don't know about the blood work - cuz' mine was @ 600 when I was admitted!!!!

It does get better! It really does!!!!

Erin

Originally Posted by kpearl

Missy and Erin, I'm glad to hear that you both came through your IVIG ok. I would like to know for how long the effects of having this procedure last, and do you feel almost normal, or are your MG symptoms just more manageable.
I ask this since I've only been diagnosed just a short time now, I have alot to learn. I see my neuro later this month and I am making a list of questions. I tell ya, some days I don't know how to manage. I'm afraid to go anywhere in case I have another crisis. I travel to Florida every March with my husband and friends, and I'm afraid to go. I live in Canada and I don't know if my travel insurance will cover me for a pre-existing condition if I happen to run into trouble. I',m afraid to just go out for an evening with friends, I might choke on my dinner, or worse not be able to breath. This has certainly put a damper on my lifestyle, and I feel like I'm punishing my husband. We went out New Years Eve, I didn't drink, I certainly didn't dance, I'm becoming a real stick in the mud. If you haven't noticed, I'm feeling a little sorry for myself, and I apologize. But to get back to IVIG's. Does your blood work have to be positive to warrant this procedure, my blood work was normal.