[art chick]

We went to an Art Festival last weekend. We walked the length of a football field and then some in the sun then stood for about 20 minutes to get food. Then we sat in the sun since there were no tables in the shade.
After eating, we walked through the art area. All in the sun. It was about 80 degrees but I have to tell you I am used to being in the house and the A/C. All of a sudden, I felt really strange and I knew something was very wrong.

Three more steps and my right knee starts giving out every two to three steps. I cannot walk at all. So, my husband goes to get help and two EMT's end up coming over to escort me all the way through the venue in a wheelchair. Not fun. But I did teach two more people about MG and they were happy to learn so that was pretty cool.

I am having a very bad week and I can see why a handicapped parking permit would be great right about now (congrats Abby!)...not that it would have helped me on that day but right now I feel so limited because I cannot even walk the length of a block without my legs giving out the rest of the day. My stamina and strength are shot. It's been months since I have been this limited. I think the stress of having my child diagnosed with MG has caught up with me.

I had the worst side effects ever on IVIG this week: leg paralysis and very low bp. Of course, no one had ever seen the paralysis before and they had to report an adverse drug event. My legs got heavier and heavier until they were absolutely dead. Has anyone had an experience like this? It took 6 hours each day to infuse. I am exhausted.

debra

[draggin']

Originally Posted by art chick

We went to an Art Festival last weekend. We walked the length of a football field and then some in the sun then stood for about 20 minutes to get food. Then we sat in the sun since there were no tables in the shade.
After eating, we walked through the art area. All in the sun. It was about 80 degrees but I have to tell you I am used to being in the house and the A/C. All of a sudden, I felt really strange and I knew something was very wrong.

Three more steps and my right knee starts giving out every two to three steps. I cannot walk at all. So, my husband goes to get help and two EMT's end up coming over to escort me all the way through the venue in a wheelchair. Not fun. But I did teach two more people about MG and they were happy to learn so that was pretty cool.

I am having a very bad week and I can see why a handicapped parking permit would be great right about now (congrats Abby!)...not that it would have helped me on that day but right now I feel so limited because I cannot even walk the length of a block without my legs giving out the rest of the day. My stamina and strength are shot. It's been months since I have been this limited. I think the stress of having my child diagnosed with MG has caught up with me.

I had the worst side effects ever on IVIG this week: leg paralysis and very low bp. Of course, no one had ever seen the paralysis before and they had to report an adverse drug event. My legs got heavier and heavier until they were absolutely dead. Has anyone had an experience like this? It took 6 hours each day to infuse. I am exhausted.

debra

Im suprised it took that long. I was in the heat last year for less than 15 mins when my legs gave out. Ended up in hospital for 4 days on IV steroids. I havent tried IVIG so I cant comment on that , but stay out of the heat when at all possible.

[Stellatum]

Debra, I'm glad you're taking into account the stress of your daughter's new diagnosis. I think emotional trauma like that is a serious trigger for many of us. We learn to watch out for other triggers we know about, like being out in the sun, but forget about these--at least I do! In fact, as I type this, I'm realizing that I just said to my husband, "Why am I so weak? None of the things that usually set me off are going on." And at the same time I was telling him how upset I am by some sad news I just heard about a friend. So, there you have it.

I'm so sorry about the bad IVIG experience. I hope you can get stronger soon.

Abby

[tysondouglass]

Originally Posted by art chick

We went to an Art Festival last weekend. We walked the length of a football field and then some in the sun then stood for about 20 minutes to get food. Then we sat in the sun since there were no tables in the shade.
After eating, we walked through the art area. All in the sun. It was about 80 degrees but I have to tell you I am used to being in the house and the A/C. All of a sudden, I felt really strange and I knew something was very wrong.

Three more steps and my right knee starts giving out every two to three steps. I cannot walk at all. So, my husband goes to get help and two EMT's end up coming over to escort me all the way through the venue in a wheelchair. Not fun. But I did teach two more people about MG and they were happy to learn so that was pretty cool.

I am having a very bad week and I can see why a handicapped parking permit would be great right about now (congrats Abby!)...not that it would have helped me on that day but right now I feel so limited because I cannot even walk the length of a block without my legs giving out the rest of the day. My stamina and strength are shot. It's been months since I have been this limited. I think the stress of having my child diagnosed with MG has caught up with me.

I had the worst side effects ever on IVIG this week: leg paralysis and very low bp. Of course, no one had ever seen the paralysis before and they had to report an adverse drug event. My legs got heavier and heavier until they were absolutely dead. Has anyone had an experience like this? It took 6 hours each day to infuse. I am exhausted.

debra

Sorry to hear you are not doing well...hate that these periods of weakness come on so quickly...yet they are inevitable.. maybe haha. You should be able to stand outside for longer than you did and not be so weak...

but on the ivig front, how long does it take you to usually infuse? I take 6-7 hours each day... never faster

[art chick]

Tyson-It usually takes 3 1/2-4 hrs. to infuse 25grams (in 250ml) of IVIG. I get 5 days every 21 days. My max rate is 120 and we start at 20 and go up by 20's. Are you getting a bigger dose than me or going slower? I get a lot of side effects so my rate is actually pretty slow I hear....

Annie--I just had a metabolic panel that was great but I haven't had a before and after test. I am a great at hydration and they don't worry about that at all with me but I will bring up the tests and see what they say. Thanks!

And you are right...I am likely a few activities away from a crisis since I am weaker this morning and was having increased choking last night. I am lying very, very low today and praying IVIG kicks in soon!!!!!!!

debra

[AnnieB3]

Debra, I'm very sorry that you tank like that. I'd like to go out and do those normal things too. An Art Festival sounds wonderful. I can't even do the Minneapolis Institute of Arts, which is inside and air conditioned!

Have your doctors done a metabolic panel before and AFTER having IVIG done? What about serum osmolality (shows how hydrated you are).

When you have an influx of fluids, whatever amount of sodium you have in your body becomes relatively less in quantity. You can get hyponatremia (low sodium). That's a fairly dangerous situation. And it's hard to combat too. You can chew on a few potato chips while you are having IVIG to increase sodium (sodium and potassium work synergistically together) but too much sodium will simply increase how much fluid you retain.

Talk all of this over with your primary doctor. You need to make sure that your heart and kidneys are in good shape. IVIG can cause problems if they aren't. IVIG can also cause a buildup of albumin. It can also make circulation "thicker" and, in some people, can cause blood clots. I'm not saying this to worry you but you need to be aware of all of the side effects of IVIG so that you and your doctor can figure out what is going on. Low blood pressure is "normal" but not that weakness you describe . . . unless there are electrolytes too high or low during or after the IVIG!

I'm glad you had a teachable moment. Not everyone is open to that. I can't help myself when someone says casually that they're so tired and have numbness or tingling in their extremities - I have to bring up the B12 thing.

I hope you'll get better soon. If you go downhill that fast and that far, you know you're a few activities away from a crisis!


Annie