[xanadu]

Nearly choked at dinner tonight. It was scary Neuro said "see you in 6 months" without a dx or treatment plan. What will I do ?

[Joanmarie63]

It is always scary when you choke. I am sorry your Dr. doesn't seem to take the time to work with you. Just take it easy, slow down while eating and try to relax. Eat when you have strength, I know I don't need to tell you all that but sometimes we just need to hear it.

I hope you start getting stronger soon.

[tysondouglass]

Xanadu, I know how that feels, and many of us do. Though also many of us dont. Its very scary. But when it gets to the point when you think your too weak you need to go to the ER or some other form of medical treatment. I was having a crisis of thanksgiving, with all the stress and no sleep that goes with family dinners, it made it hard to space out time to rest. Yet Im glad I had this website or I might not even be alive. They all told me to go to the ER. I thought, thats a little drastic, dont you think? But no.

I went to the ER, I couldnt swallow very well, my breathing was stopping, I could barely walk. I had to stay in the hospital for a week, from the crisis.

Just be aware that these things happen very quickly. As im sure you already know..
But I say, go to a different neuro. He clearly doesnt understand the frustration and medical issues that you are going through.

be well.

[PMCPMC]

Originally Posted by xanadu

Nearly choked at dinner tonight. It was scary Neuro said "see you in 6 months" without a dx or treatment plan. What will I do ?

Compatabilty with your specialist is key.
without that he is just stealing your money change!

[xanadu]

It nearly happened again while drinking. Husband was outside gardening so I suppose I should be more careful and make sure he is closer when I do eat and drink. There is no ER for 100 miles. Not really an option if things happen. Also would take too much time and money to find a new neuro. Would have to go interstate and wait months for an appt. Maybe the neuro I have will listen if I go back and say I am choking although he would probably say I am imagining it.Maybe I am just tired from Xmas and the stress of his appt and attitude recently.

[bluesky]

Originally Posted by xanadu

It nearly happened again while drinking. Husband was outside gardening so I suppose I should be more careful and make sure he is closer when I do eat and drink. There is no ER for 100 miles. Not really an option if things happen. Also would take too much time and money to find a new neuro. Would have to go interstate and wait months for an appt. Maybe the neuro I have will listen if I go back and say I am choking although he would probably say I am imagining it.Maybe I am just tired from Xmas and the stress of his appt and attitude recently.

You're probably not going to like my opinion but I think you should get started on getting an appointment with another neuro. Choking is really, really dangerous and it worries me that your neuro isn't paying attention. If you still don't have enough help in a few months than at least you'll have the other appointment waiting for you. You can always cancel it if you get the help you need. It the meantime call your current neuro every single time you have a choking episode. At least leave messages. It may feel like badgering but that's probably what you're going to have to do to get noticed anyway.

It's scary that you're having these problems and there is no ER near you!

Ally

[AnnieB3]

Xanadu, Was there anything you can point to that may have made things worse? Alcohol (a muscle relaxant)? Talking more than usual?

I agree about trying to see another doctor. If you are now choking, you may be getting worse. There has to be someone in Australia who can help you!

Annie

[xanadu]

the meantime call your current neuro every single time you have a choking episode. At least leave messages. It may feel like badgering but that's probably what you're going to have to do to get noticed anyway.

I might do this! What have I got to lose. He already has me labelled so if this makes him think 2x - it would be good. It is worth a phone call.

I will try another Neuro but am unsure if I can afford it. The last trip interstate cost me thousands and was a waste of time. While I take steroids I test negative to everything.

Was there anything you can point to that may have made things worse? Alcohol (a muscle relaxant)? Talking more than usual?

I had a glass of wine which has been ok before. But I have had a bit of (extended) family stress over Xmas + have been reducing the steroids a little as GP was worried about weight gain. Guess it all adds up ?

[PMCPMC]

Originally Posted by xanadu

It nearly happened again while drinking. Husband was outside gardening so I suppose I should be more careful and make sure he is closer when I do eat and drink. There is no ER for 100 miles. Not really an option if things happen. Also would take too much time and money to find a new neuro. Would have to go interstate and wait months for an appt. Maybe the neuro I have will listen if I go back and say I am choking although he would probably say I am imagining it.Maybe I am just tired from Xmas and the stress of his appt and attitude recently.

They got to know me and took me into triaze and a bay straight away as I declared I was Mg..
This establishes all the incidents on hospital record.
if the issue is other than mg it gets it sorted also.
I have had many infections and all have been dealt with by A&E because the incidents are acute medicine required.
Don't assume these incidents cannot be sorted just because you are mg.

[xanadu]

Update on this - feel like I am coming down with lung probs... pain ...hard to breath, fever etc. Feels like I may have got some fluid onto lung last night. Will see local GP tomorrow if no better. They have no notes for me. Suspect Neuro will be on hols in the city. ( sometimes they ring through for help). Normal city GP on hols. Oh joy..