[momma3love]

Hey all. This last week has not gone very well. Last friday I saw a different neuro but in the same office as the one I usually see. He was actually new to the office. I liked him tho. He put through orders for me to get plasma done. So I have to wait for that to go through with the insurance company and what not.

In the meantime I of course continued to get worse. I went to the local ER on Sunday night. They were swamped and called my on call neuros. They wanted me transferred to their ER. This is about 2 hours away from where I live. So they say it is ok for my bf to drive me up there. This is the worst I have ever been. I was not able to hold my head up or take anything more than a shallow breath. But of course my O2 stats are fine. Supposedly they are going to admit me through the ER when I get up there. This is the only reason I go. Can you guess what happens after I drive all the way up there, wait for several hours in the waiting room and then for a doctor to see me, yup THEY SENT ME HOME!!!!!!!!

Granted I was feeling better than when I had entered the local ER, but they did not do anything to help me. I would really like to know why this happens to me. Why do I feel better on my own??? This is why I had stopped going to the ER for the longest time. They usually make me sit and wait and I feel better. Does anyone else have this happen? Or know why it does?

Well I am still waiting on the insurance company to say yes or no on plasma. I am still very weak but have not gotten that bad again yet. I am very afraid I will get bad cuz I know I will not go back to the ER again. I did not have the money to go up there the other day for nothing. I told the nurse as I left that next time my family will have to call 911 after I pass out, thanks to this experience. I know that they could have kept me because some of my tests came back iffy, as the neuro put it. Doctors just don't understand what their decisions cost us.

So I am very frustrated and waiting as patiently as possible. I really hope everyone else is doing better than this! I wish you all a happy healthy day today!

[redtail]

It really is a very frustrating disease.
Thankfully I havn't had any rushes to hospital er's for my mg.
Buuut visits to my neuro are always a bit of a struggle, cos he does all the chicken dance tests etc, and I have the strenth of a normal person, ( said sarcastically)
At home its a different story, I struggle to type and at other times other easy day to day things.
Sometimes I want to say to him " hey why not come home with me for a week and see just what I'm like".
I think I've decided next time I'm about to see him, the night before I will stay up to 2am, which always makes my mg worse, and after a 3 hour car journey, he may just see what I'm like generally...............I'll let you know, I see him Monday.

[momma3love]

It is a very frustrating disease. I for the longest time was in the exact same boat as you describe. But sometime in the last year I started to get much worse. And since surgery in April I just feel like I never really felt much better. I really hate hospitals. It took a lot of convincing on my family's part to get me to go. Well it's after hours now and I still have not heard when or if I will be getting the plasma exchange. I tried all day to get a hold of the person who co-ordinates it. I don't even know how many days it will be or how I am gonna afford the gas to get there, but at least if I knew the plan I could try and figure it out over the weekend. I have 3 kids for crying out loud. Sorry I am just so frustrated. I am still feeling pretty weak. There is just too much going on for me right now. It would take 5 pages to go into it all. LOL. Ah well what can you do right? I hope you get some good news monday and I would go with that plan. I think sometimes we have to show them how bad it gets. Good Luck!

Hugs
Carrie

Originally Posted by redtail

It really is a very frustrating disease.
Thankfully I havn't had any rushes to hospital er's for my mg.
Buuut visits to my neuro are always a bit of a struggle, cos he does all the chicken dance tests etc, and I have the strenth of a normal person, ( said sarcastically)
At home its a different story, I struggle to type and at other times other easy day to day things.
Sometimes I want to say to him " hey why not come home with me for a week and see just what I'm like".
I think I've decided next time I'm about to see him, the night before I will stay up to 2am, which always makes my mg worse, and after a 3 hour car journey, he may just see what I'm like generally...............I'll let you know, I see him Monday.

[redtail]

Hi Carrie,

I really do feel for you, I think you people who have children as well as mg are truly amazing, I struggle with just me.
I don't think people realise just how bad it is with mg, and how we have to be so totally organised, so we can rest up before a big event, even if it is just a trip to the hospital. For a "normal" person its easy, for us its a big struggle with concequenses.
Hope you get some good news on Monday, thinking of you at this time with all thats going on in your life, take care
Kate

[Pat 110]

Hey Carrie,

I am so sorry for all you are going through right now. I can't imagine how difficult it must be dealing with this wonderful disease, frustrating doctors and taking care of 3 children...you are a very strong women. I hope you hear some good news on Monday and the plasmapheresis helps you. I'll be keeping good thoughts. Take care.

Hugs,
Pat

[Alan53]

That's what gets me my Neuro does the test and how can you tell in those few minutes just how bad it is for us
and he doesn't really listen to what i say well thats how i feel so frustrated
with it
I'm thinking of the day before to really push myself so I'm not at my best
as I'm seeing my Neuro next Friday
Alan

[AnnieB3]

Sometimes I have a hard time responding to posts like yours because I get so damn angry (at doctors).

Did they even do breathing tests? An oximeter while you were walking? An arterial blood gas? Not that the test is fun but it is useful. You can't tell how an MGer is doing by looking at them!!! That's why there are these tests. Did they even do a clinical exam? Call your neuro?

Kate, I totally agree. I have a small dog and I can barely manage. I can't imagine having children to take care of while having MG.

Next time, ask them to do those tests. You cannot judge a patient's disease by how they look. I am so sorry they treated you that way. Please don't give up on seeking out help. Those ER doctors probably read a paragraph or two at the most about MG, saw that grotesque photo - the same ones they print over and over in books - and figured you were fine because you didn't look that way! Most ER doctors are out of their league when it comes to MG. But they do have brains and should be able to logically work through any medical problem!!!!

You just take it as easy as you can. I hope your neuro can fix all this BS for you and make you better.

Annie

[erinhermes]

Hey honey! I am so sorry you are having to go through all of this! It is just not right!
When I was in last Saturday, they tested EVERYTHING - my arterial blood gases, 02 levels, EVERYTHING, plus my neuro was THERE to make sure they checked me out.

I don't know why you are getting the runaround. This is NOT rocket science.
I think a lot of drs suffer from high functioning autism - hence the lacl of empathy - my son has it as well, so I am NOT making light of it @ all, but I do truly believe that.

I remember a trip to our lake house b/4 I was dx'ed. I kept telling Mike I was having problems breathing, and we thought about turning around but I really wanted to see my grandma, so we kept on. By the 2nd day I felt much better. I was even able to get my housework done, but couldn't eat anything and was down to ensure - hate that stuff!

You may want to call your dr and ask (for future reference) that they test you for everything while you are @ the hosp.! Also, you need to stay overnight - just in case. They made me stay even though I begged to go home!

I'm praying for you, honey!
Love,
Erin

Originally Posted by momma3love

Hey all. This last week has not gone very well. Last friday I saw a different neuro but in the same office as the one I usually see. He was actually new to the office. I liked him tho. He put through orders for me to get plasma done. So I have to wait for that to go through with the insurance company and what not.

In the meantime I of course continued to get worse. I went to the local ER on Sunday night. They were swamped and called my on call neuros. They wanted me transferred to their ER. This is about 2 hours away from where I live. So they say it is ok for my bf to drive me up there. This is the worst I have ever been. I was not able to hold my head up or take anything more than a shallow breath. But of course my O2 stats are fine. Supposedly they are going to admit me through the ER when I get up there. This is the only reason I go. Can you guess what happens after I drive all the way up there, wait for several hours in the waiting room and then for a doctor to see me, yup THEY SENT ME HOME!!!!!!!!

Granted I was feeling better than when I had entered the local ER, but they did not do anything to help me. I would really like to know why this happens to me. Why do I feel better on my own??? This is why I had stopped going to the ER for the longest time. They usually make me sit and wait and I feel better. Does anyone else have this happen? Or know why it does?

Well I am still waiting on the insurance company to say yes or no on plasma. I am still very weak but have not gotten that bad again yet. I am very afraid I will get bad cuz I know I will not go back to the ER again. I did not have the money to go up there the other day for nothing. I told the nurse as I left that next time my family will have to call 911 after I pass out, thanks to this experience. I know that they could have kept me because some of my tests came back iffy, as the neuro put it. Doctors just don't understand what their decisions cost us.

So I am very frustrated and waiting as patiently as possible. I really hope everyone else is doing better than this! I wish you all a happy healthy day today!

[momma3love]

Hi Annie,
Yeah they did do tests and I saw the resident neuro. They did a very long exam. They did an ABG, never said how it looked. They did a negative something or other breathing test and the one where you blow as hard as you can. The problem was the respiratory guy and the neuro were arguing over if he was doing the test right and if the results were good. They were very bad for me, the negative one was less than 20. But the RT guy was like that's good. It was all very strange. After the breathing tests I got very tingly in my feet, hands, and face. They said this was because I was expelling all the CO2. The neuro said she was not sure why that was happening, but I must be fine because I was getting rid of it now.

And they released me saying they did not think it was really my MG getting worse and that they could find nothing wrong. But I really should speak to my reg doc about my extreme anemia, the blood in my urine, oh and my potassium is a bit low, and my sugar is a tad high again. But you are fine go on home. That all makes sense right.

I just hope I can get my plasma exchanges started next week. That is all I can hope for right now. I hope you are feeling strong and happy today!

Originally Posted by AnnieB3

Sometimes I have a hard time responding to posts like yours because I get so damn angry (at doctors).

Did they even do breathing tests? An oximeter while you were walking? An arterial blood gas? Not that the test is fun but it is useful. You can't tell how an MGer is doing by looking at them!!! That's why there are these tests. Did they even do a clinical exam? Call your neuro?

Kate, I totally agree. I have a small dog and I can barely manage. I can't imagine having children to take care of while having MG.

Next time, ask them to do those tests. You cannot judge a patient's disease by how they look. I am so sorry they treated you that way. Please don't give up on seeking out help. Those ER doctors probably read a paragraph or two at the most about MG, saw that grotesque photo - the same ones they print over and over in books - and figured you were fine because you didn't look that way! Most ER doctors are out of their league when it comes to MG. But they do have brains and should be able to logically work through any medical problem!!!!

You just take it as easy as you can. I hope your neuro can fix all this BS for you and make you better.

Annie

[momma3love]

Hey Erin!
I totally agree about the autism thing. My lil sis has it. And doctors definitely do not have empathy. At least not any I have met recently. I guess they are all burnt out. I really did not like the neuro that oversaw me while I was in their ER. I had to deal with her before when I had surgery. She does not get MG at all. Even tho she says she sees lots of MGers in clinic. And she would not let me explain my worries of going home and getting bad again.

I am doing ok now. Still having a really hard time every day. If I am not all over the mestinon doses I am in big trouble. Even then I am taking 6-8 a day, more than ever before, and that almost does not seem like enough sometimes. I am doing everything they ask and that I can do to get better and I am not. I cannot live on my couch forever. LOL. It's really not funny, but they do not get that.

Well I am praying that we both feel better soon. No more ER visits. Right? Well I hope you enjoy every minute you have left with your niece. Lots of hugs, and I like to watch a movie all crowded on the couch with my boys when I can't do anything else but want to do something with them.
Hugs
Carrie

Originally Posted by erinhermes

Hey honey! I am so sorry you are having to go through all of this! It is just not right!
When I was in last Saturday, they tested EVERYTHING - my arterial blood gases, 02 levels, EVERYTHING, plus my neuro was THERE to make sure they checked me out.

I don't know why you are getting the runaround. This is NOT rocket science.
I think a lot of drs suffer from high functioning autism - hence the lacl of empathy - my son has it as well, so I am NOT making light of it @ all, but I do truly believe that.

I remember a trip to our lake house b/4 I was dx'ed. I kept telling Mike I was having problems breathing, and we thought about turning around but I really wanted to see my grandma, so we kept on. By the 2nd day I felt much better. I was even able to get my housework done, but couldn't eat anything and was down to ensure - hate that stuff!

You may want to call your dr and ask (for future reference) that they test you for everything while you are @ the hosp.! Also, you need to stay overnight - just in case. They made me stay even though I begged to go home!

I'm praying for you, honey!
Love,
Erin