Well after getting IVIG for over 5 years with pretty much one stick my old faithful vein began to scar a few months ago so I can no longer use it. Now that I have to use other veins, At the most it has taken 3 times to get the needle in but today for some odd reason every vein my home nurse went to today blew! After trying many, many times she gave up and decided to try it again tomorrow.

I've had this nurse for over 4 years and she is usually a one stick wonder but for some reason today my veins just didn't cooperate with her.

Never had that happen before. My body is telling me that it's time for my IVIG but luckily I can hold off another day.

All I can say is My veins better cooperate tomorrow. I can't take many more sticks. I feel like a human pin cushion right now!

Well at the infusion center where I go they always wrap my arm with a heating pad for about 15 minutes. They also told me to drink LOTS of water the night before and in the morning. NO COFFEE!! Good luck tomorrow I know what you are feeling, I always take 3-4 sticks and it hurts. Plus you walk around looking like a drug addict.
Mike

That is so true pingpongman! My arms hurt, have bruises all over them and look pretty bad. If anybody asks me, I'll have to tell them that My drug of choice is Immunoglobulin! It's my "go-go juice".

Successful infusion today. It took 4 sticks but the tiniest vein was the mightiest. Just like David and Goliath... It reminded us to never underestimate the power of the little guys!

4 sticks all I can say is OUCH! I get my last infusion on Tues this being my second round with zero results. I think this will be my last IVIG treatment. So glad it works for you.
Mike

Awww, so sorry that IVIG hasn't worked for you. What is your infusion protocol? I recieved 4 days of IVIG the first time when I started it five years ago. Now I'm getting one IVIG infusion every 5 weeks.

When did you have your first round of IVIG?

My first round was in Feb I am now on the second round with 4 done and one more to go Tue. What my doctor does is schedule 5 infusions over 3 week peroid. 2 treatments one week, 2 treatments the next week and one treatment the 3rd week. This is done this way because of my age (70). My wife and I now think I have refractory(?) MG. Meaning it is resistive to all treatments. My Neuro said plasmapheresis would be the next treatment he was going to try.
Mike

Mike, I am really glad that your doctor is going to try plasmapheresis next, because I've heard it works really well for some patients who aren't helped by IVIG. I'm also glad that he's giving the IVIG a little more chance to work. I am feeling eerily good--I keep expecting a crash, and it hasn't come. My course of IVIG ended on March 1, and I didn't notice any improvement for almost two weeks. Then I had two very good weeks, and then a return of symptoms, but they've been quite mild. I really don't know what's going on.

I hardly mind this "living on borrowed time" feeling, it's so nice to be on my feet. The other day my friend was having a crisis, so I came with two of my teenagers, and we took her four little boys to McDonald's They are extremely hyperactive and mildly autistic, so even with three of us, it was a stupid thing for me to do. I was in a sort of panic the whole time because I kept counting the identical twins as one person as the flew by in a blur (hey, say that five times quick!) and thinking one of the kids was missing: just the sort of thing that ordinarily does me in. But I'm still standing...

I'm rooting for you to have some similar good surprise.

Abby

That is really what is strange about this disease. Some treatments work for some and not for others. I guess the toughest thing for me is the mental aspect. I have been very active all my life and now I just can't do it. I haven't driven since Aug so my wife has to do all my errands and I never relied on anyone to help me with anything. It's just a real tough adjustment for me.
Mike

I sure do know what you mean. I am seeing a talk-therapist (psychologist) who specializes in helping people in my situation adjust. I think she's been helpful. It's not that she tells me anything I don't know, but she does help me focus in on what particular thing is really bothering me. Also, she gives me some strategies, like how to manage big blocks of time where I'm not strong enough to do much, but where doing nothing really puts me in a funk. (In case anyone's wondering, the strategies are: schedule some activity, even if it's just for 15 minutes, for the middle of that block of time; and also schedule some time where the "activity" is to do nothing worthwhile at all. For me, scheduling that "nothing" time makes it feel more like I'm accomplishing resting, instead of like I'm accomplishing nothing. But these strategies are designed for my particular problem, which seems to be that too much unstructured time depresses me. She helped me figure that out, too.)

Abby

Mike, I agree and am glad that you are going to try plasmapheresis. I hope it works for you so you are able to get some relief that lasts a little while longer than the IVIG did. I have also heard that many people have had success with plasmapheresis. I've never had plasmapheresis because IVIG has really worked well for me, Thank God

MG is very much an individualized disease because it really can affect everyone differently. What really bothers me sometimes is how so many doctors dismiss the possiblilty of someone having MG because they want to put everyone with this disease all in the same box. I just hate to think of all the people in this world that do have MG and could find relief if they could get a diagnosis and receive proper treatment

MG doesn't only affect us physically but also mentally, emotionally and spiritually. I also have spoken to a psychologist before about my mental, emotional and spiritual state due to MG. She was great at helping me to focus on one thing at a time so I wouldn't get so overwhelmed all the time. She also made some very nice relaxation CD's for me and that helped a whole lot because I learned how to calm myself down by focusing on other things such as my breathing etc. Funny how that really does work for me.

I'm glad that your psychologist is helping you too Abby. We all need to learn techniques that can help us navagate through this maze called Myasthenia Gravis.

Gentle Hugs to both of you

Shari