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

Yes, I feel very weak but as long as I keep resting I feel ok. I am sure the docs will figure out something next week. I am hoping for plasmaphoresis down at Jefferson where they do it all the time and treat a lot of MGers. Hopefully I will be a good candidate for thymectomy.

kathie

Kathie,

Very sorry that you have experienced this. MG is nothing to mess with especially when you get that weak.

I had a recent situation to share. My MG was diagnosed in 2008. Fast-forward through that year I've had plasmapheresis, IVIG, radiation, chemo, and the thymectomy. The thymectomy didn't give me remission from the symptoms so I'm on Mestinon along with the timespan, Imuran, and Prednisone. Until this year, I was able to minimize to only Prednisone and Imuran, I was living a normal life since 2008.

Now, the trouble started near the beginning of this year. My weakness started to come back. I started feeling my eyes getting a little tired, then my upper extremities of arms and legs, then the neck and slowly swallowing.

I knew this was bad the moment my eyes started getting tired. I called up my neurologist's nurse to give my doctor the news asap. My neurologist was booked for at least a few weeks. Even, then, my nurse called me back the same day and told me to come in the next day. My neurologist made a exception to see me on a day where he didn't even see outpatients.

He told me he knew I was dropping quick and made it important that MG was no matter to mess with. He increased my Predisone and put me back on Mestinon. I was thinking to myself that the Mestinon will just bring me back to normal like it did before but I'd just have to take it every 2-4 hrs. But boy was I wrong. Mestinon no longer worked like it did for me 4 years ago. It did not help with the eyes and only did with swallowing and a little for the arms and legs. I notified my doctor that I was getting weaker the very next week. He wanted to admit me into the hospital, but I refused as I hated it in there. He let me know that if I can't handle my own saliva I got to tell him or get admitted to the hospital right away.

Sorry for the long post, but I felt you'd like to hear it from another fellow MG victim haha.
As for the latest update for me, I'm back on Mestinon and timespan because I fear when i wake up I would not be able to take in my first dosage of mestinon. I'm also increased back on Prednisone and I'm recently just had my session of IVIG that I haven't had in a long time. I'm very weak at the moment but I'm hanging in there.

I hope you or your loved ones can talk through to your neurologist to let them know how your suffering and hope your doctor understands your dangerous situation so that you can get help asap.

-kt

My symptoms got worse 1 week before Christmas. I am thinking it may be due to the colder weather. Anyway, I am out on disability until June. I am holding tight until the neuro appt in 3 weeks. The chocking issues have subsided when he added the time release mestinon overnight.

I have had urinary incontinence issues prior to my next dose of mestinon. I have not had any of the GI sideeffects of the mestinon and I have been on it 3 months now. I had numerous bouts of diarrhea today after having a root beer soda. I will not ever drink a dark soda again. I think it is due to the phosphorus in the soda. Or could it react with the mestinon? Has anyone else had this reaction to dark soda?

thanks,
kathie

The mestinon did not cause diarrhea with me to start with. Then it caused it if I drank any kind of sugary drink. Now it causes it no matter what. And I don't mean just a little bit of trouble. I have been dehydrated half the time lately.

I started taking imodium every day a week ago. I am doing SOOOOO much better with it.