Well I went to my follow-up with my neuro-optomologist today. I had 2 days of extreme weakness. I have had chocking issue getting my snack down to take my mestinon. I take a small snack with mestinon so I can eat an hour later with out chocking issues. I have had several days of choking on the snack. I also had problems with waking up barely able to talk & short of breath until the morning dose of mestinon takes affect. The neuro-opt was very concerned. he wrote me a script for the 180 mg time -release for night and called the neuro. The neuro could not get me in so the doc's decided I should go to the ER to get admitted for plasmaphoresis. SPent the whole day in the ER. Even after the doc called ahead to the ER to make arrangements to get admitted, they had me hang around all day in the ER and then sent me home without any treatment. Quite exasperrating, and now I am even more exhausted than when I started. They told me to just keep upping the dose of my mestinon to get me through to the next neuro appointment ( 5 weeks) when they will explore other treatment options.

I was nervous about going the ER, but I have been feeling so bad, I was relieved to finally get some treatment so I could feel better. I feel even more exhausted now to the point of being non-functional.

I can't wait to tell the Nero-op what happened in the morning. They did do a thorough test on my strength and was amazed at how weak my neck, arms and even my hands were. I always thought my legs were the worst. I just guess I notice them so, because I need to walk. I guess sitting in the recliner all day, you do not realize how weak your neck and hands are.

kathie

Sorry you had such a hard time. It seems that we get passed around from doctor to doctor and made to wait and wait for no results. The only people that are always on top of things are the ones that send the bills.

So they did a pulmonary test where you blow out. The first reading was 2.35, then 2.0 then 1 something. How good or bad is this does anyone know.


kathie

That is a very upsetting situation Kathie. You should call your doctor right away and let them know what happened and how you are doing right now.

The pulmonary function test sounds like a vital capacity test from the readings that you gave. They should be at least 3-5 to be good, but we don't know what normal is for you. I do know that anything with a 1 in it is not good at all.

That test really needs to be in combination with another pulmonary function test that test your diaphragm function, called negative inspiratory force. That one is much more specific to MG and more telling. They should have done that one. It is where you take a breath and blow out and then put your mouth on the tube and suck in while it is blocked just as you are pulling in.

If you go in to the hospital again, they need to do that test on you. It should be above -40 but readings below -20 are not good. Usually, neuro staff will put you on a respiratory watch where you get your breathing rechecked every 4 hrs when your numbers are bad.

I hope they get you some help soon. Please let us know...

The neuro-op is out of state at a conference. They are going to try to manage me via phone calls & mestinon dose for a few days to see how I do. I have instructions to go to the local ER if I experience breathing problems. I am on instructions for complete rest and no physical activity until things are better managed. So I am out of work on disability for a while. I need the rest. I have been getting 12 -15 hours of sleep and am tired after 4 hours and need a nap with minimal physical activity. I am thinking this will work and would rather do this as a scheduled out patient.

So any suggestions, tips on what to do or know for plasmaphoresis?

kathie

Kathie, Has anyone gotten back to you? Are you still this bad?

I cannot believe the ER didn't so other testing. If they were so "amazed" at how weak your upper body was, why didn't they admit you for observation and oxygen at the very least? They could've checked your oximetry while you were sleeping to see if you're getting enough oxygen.

I haven't had plasma but others have. It's not a simple procedure and you should make sure they know what they're doing and that they've helped other MG patients before!

Anyway, I hope you are getting more help. You sound like you're on the verge of a full blown crisis. Take care.

Annie

Thanks Celeste, that explains it. I usually only drink water or ice tea without sugar. I will avoid all sugary drink.

I am glad the immodium helps.
kathie