[pino10]

I've been diagnosed and start treatment on monday or tuesday with IVIg but I'm very tired and feel sick. How do I know when it's essential to go to ER. What are the signs that say you may not make through the weekend?

[AnnieB3]

Pino, Welcome. I'll get right to it, since it seems you need help now.

Can you take your pulse? Get a second hand clock or watch (or on TV) and count how many beats in either 10 seconds (and multiply by 6) or in 60 seconds. The pulse can get really high when the heart is trying to get you oxygen. Do you know what your normal pulse is?

Do you have an oximeter by any chance?

Are you having a hard time breathing in or out, even at rest?
Are you having a hard time swallowing?
Do you have so much increased generalized weakness that you can't do anything but sit or lie in bed?

If yes to ANY of the above, then it's time to go to the ER.

Another sign is if rest is not helping to make you better.
Another serious sign is sudden shortness of breath, like you can't breathe at all.

Are you on Mestinon? If not, I'd sure like to know why!!!

It's better to make sure you are okay and just go to the ER. Sometimes you can't even tell if you are getting worse if you get worse slowly. When I had my crisis, I had gotten so weak so slowly that I didn't even know I was as bad off as I was. They can do things for you in the ER like an arterial blood gas, MIP and MEP breathing tests, oximetry and a clinical exam.

When in doubt, go in. Getting worse with MG is nothing to mess with.

I hope you will be okay.

Annie

[pino10]

Originally Posted by AnnieB3

Pino, Welcome. I'll get right to it, since it seems you need help now.

Can you take your pulse? Get a second hand clock or watch (or on TV) and count how many beats in either 10 seconds (and multiply by 6) or in 60 seconds. The pulse can get really high when the heart is trying to get you oxygen. Do you know what your normal pulse is?

Do you have an oximeter by any chance?

Are you having a hard time breathing in or out, even at rest?
Are you having a hard time swallowing?
Do you have so much increased generalized weakness that you can't do anything but sit or lie in bed?

If yes to ANY of the above, then it's time to go to the ER.

Another sign is if rest is not helping to make you better.
Another serious sign is sudden shortness of breath, like you can't breathe at all.

Are you on Mestinon? If not, I'd sure like to know why!!!

It's better to make sure you are okay and just go to the ER. Sometimes you can't even tell if you are getting worse if you get worse slowly. When I had my crisis, I had gotten so weak so slowly that I didn't even know I was as bad off as I was. They can do things for you in the ER like an arterial blood gas, MIP and MEP breathing tests, oximetry and a clinical exam.

When in doubt, go in. Getting worse with MG is nothing to mess with.

I hope you will be okay.

Annie

Thanks a million for all that great info. To be prepared is always to be one step ahead. From what you say I see that I am still hanging on. Mestinon not available for me because of slow heart rate. I have a combination MG, PN. I should have been paced last month but missed the date due to being hit with sudden exhaustion. Is there any chance I might have a couple good days right after I start treatment or will I have to wait for a much longer time. As I ask you this question I realize how foolish it is. We're all different and our bodies are going to respond differently. Thanks again and many regards for the new year. Pino10

[AnnieB3]

I can't have IVIG, so I can't personally say how long it takes to kick in, though I know people who've had it and say that it pretty much makes them feel better right away.

Has your doctor talked about pre-medicating with Benadryl and Tylenol before the IVIG? And afterwards too for a day or two? Benadryl can make MG worse for some people. For you, it'll probably increase your heart rate.

I do have a concern with you and your low heart rate. Sometimes there can be dips in heart rate due to overhydration of IVIG. When someone is overhydrated, their BP can go up and the pulse can go down. You would be someone who I hope they do an ECG monitor on during IVIG. You still need to drink plenty of fluids in the days after having it too. Make sure you don't drink too much water without a little sodium in your food or you could get hyponatremia (too little sodium).

Did your docs figure out why you have a low heart rate? Mestinon only lowers mine when I take too much (like 100 mg.). Just wondering if you might be able to try it after your pacemaker.

Do you know why you have PN? Did they check your B12 levels?!

I hope all goes well with the IVIG.

Annie