I went to the ER yesterday because I could not walk and it was very difficult to breathe. My breathing muscles were cramping and spasming. It was very painful to even take a breath. They got me right in. But of course my O2 stats were fine. They did call my neuro, he asked that they do this whenever I am seen in ER. He ordered blood tests, including an ABG(arterial blood gas), chest xray and EKG. They were very attentive and understanding. Best ER doc I have ever seen, was perfectly happy to do as the neuro said.

But naturally they could find nothing wrong. As I was there I did get better, guess the mestinon kicked in. I am taking more than ever before. I have been taking 6 to 8 a day, I started prednisone on friday 40mgs a day, and Imuran 200mgs a day for about 3 weeks. This is the most meds I have taken for the MG since I was dxed. Since they could find nothing wrong they sent me home encouraging me very much to come back if I got worse again. I told him how discouraging it is and he understood. He also made a very valid point that now they have a base line so if I come in again and I am doing worse they can show that and admit me.

Yet everyday I feel like I am just hanging in there. If I go to the store or take a shower(reason for ER visit) I start to have difficulties. Breathing, swallowing, and walking.

I see the neuro tomorrow, for a follow up on the ER visit. How do I make it clear this is how I feel despite all my "normal" test results?

I love this board. You guys are the best! There is nothing like being able to know I am not alone. Thank you all so very much. To all, Have a wonderful weekend and strong, happy days ahead always!

Well, at least they knew what they were doing. Did you get a copy of the ABG or other tests? If not, you may want to. Some ER docs, even some neuros, don't "get" that an ABG showing "hyperventilation" does not mean that someone has anxiety but is in the process of their MG going downhill. They may think the test is "normal" when it really isn't. They should fax the results to your neuro so he can say whether they are truly normal or not. And O2 stats drop late in the game. Did they check your stats when you walked around? If not, they need to do that next time if they look normal. MG gets worse upon exertion!

I'm saying this because what you are describing sounds like you are on the verge of a crisis. You have to be very careful right now. If you have any episode where it feels like you are suddenly short of breath, that's a warning sign. So are the cramping and spasming of chest wall muscles.

Did they do any breathing tests? MIP and MEP? Those are almost more telling when you are that bad. My pulmonologist has standing orders for those to be done when I get worse. Do you have a pulmy?

You need to rest/sleep as much as you can. You do not want to end up in the hospital. It takes a lot longer to recover once you have a crisis - have you ever had one?

Seriously, don't do anything unless you absolutely have to. I would even recommend staying in bed for a couple days. I know you are a Mom and that is almost impossible but maybe the kids will see it as fun. You know, bringing Mom stuff in bed. Kids do like to be helpful!

Annie

Hi momma3love,
If you started Pred on last Friday at 40 mg/day right away, it doesn't suprise me that you ended up in ER…
Starting Pred usually causes a deterioration in MG condition, especially at high dose but even lower, I experienced that although I was started at 10 mg/day and I was an in-patient at that time…luckily I didn't have any breathing problem, only arm and legs muscles weakness and I was incapable of swallowing anything for 2 days. And it was only after a week that Pred was increased to 15 mg/day!
Maurice.

Momma, so sorry you had a trip to ER, I myself don't go anymore {I know thats wrong} but I get tired of them looking at me like I'm crazy, last time I went they couldn't even get my blood gases and then they transfered me via ambulance to another hosp where I spent 3 days {turned out I was allergic to inhalers I was on} my blood work all came back showing MG but since I can't take meds they released me. They wouldn't do plasma exchange because they said they lost 3 MG patients doing it in just that month. So I live quitely, when weakness starts, I stop, thats all I can do.

Momma3love,
So sorry for what you are going through. I have not been through anything like that yet with my MG. I hope you can rest like you need to. My three children are all grown but I remember when they were young and I know how hard that can be. Please keep us posted on how you are.

ckitty

Momma, sorry about your ER trip. I hope you get to feeling better soon. Everytime someone on here has a crisis or goes to the ER, I am always telling my husband about it, so he will know how to react if I have a crisis.

Joanmarie, what do you mean by they lost 3 MG patients in a month? Did they die?

momma
Hope you get feeling better soon, sounds like this summer has been bad for us all !
Joanmarie - 3 patients died they think from the plasma exchange? Not good ! I know a lot of Hospitals are not doing the Plasma & IVIG because of the cost, I guess they end up taking a loss or something, looking at or bills you would never guess that !
Mary

Hi,

I hope you are feeling better. Keep us posted on how you are!

Love
Rach x

Hi just wondering how you are doing?? Hope all is going ok for you

take care
Kate