My problem is knowing what really is urgent. Some people on the various MG forms seem to constantly have breathing issues, and that might be my new normal right now. So when is it so bad (aside from collapse or near signs of cysnosis) that I should go to the er? I can't afford two er visits and 2 hospital admissions within 3 weeks of each other!

Dear MG_Kat33,

I agree, it can be hard to know what is urgent. It is hard, and you may have to use your judgement. There could be a step in-between going to the ER and not getting care. If you know the doctor you will be seeing, and you are concerned about your symptoms but think it is not quite time to go to the ER yet, you could make an appointment to see the neurologist even though your insurance has not yet begun. They may be able to adjust your medications and help you, or start you on Mestinon if you are not already taking it (didn't you say you are not presently taking Mestinon?). That might be more affordable than going to the ER. However, if it is very hard to breathe, you may have to go to the ER anyway. If you are struggling to breathe so much that you cannot speak full sentences, for instance...maybe you can only get a few words out a time...that is a concern. If your difficulty breathing makes it hard to sleep at night, that is a concern. If you notice that you are choking more, or drooling more (these things can happen also) these are also bigger problems. If you are struggling to walk very significantly or falling, then that, too, is a problem. With these sorts of symptoms, then you do need to seek urgent assistance. I would say basically, if your breathing is so difficult that you are concerned with it and it is a struggle to breathe, go to the ER or call 911. It is very hard to worry about the financial end of it, but the hospital can work with you about the payment if necessary. There are options with payment plans and other arrangements. Getting the treatment you need is essential, especially during this hot summer weather. Please take good care of yourself.

Take care,
Erin

Thanks, Erin. Those are useful markers to look out for and make me feel a little bit less anxious - which of course is very important!

Every time I try to call to see a neuro, they are all in a group practice setting and the receptionists are adamant that they won't take cash patients - and/or that they have no availability for months. Sigh, I never should have left CA - if only I knew now what I didn't know 3 months ago when I accepted a new job!

MG_Kat33, I'm just so sorry about the difficulties with your change in location, and everything that has gone with it. I also really don't understand doctor's offices sometimes! I wish they would see you as a patient, especially when you will soon have insurance. So many things are a mystery to me.

I would say to do everything you can in the meantime to take good care of yourself. Rest when you can. Hopefully your home has air conditioning. Make good use of it! I have large ice packs, which are really used for treating sore muscles. I wrap them in a towel, and sit against them in this hot weather, or put them against my abdomen. They help cool me. I also bought a neck wrap with a freezable insert online. It was not expensive, about $10. In our recent weather, around 100F, the frozen insert lasts maybe 90 minutes, but it does seem to help me get through the hot outdoor weather a little better when I have to be in it. Sometimes I even wear it indoors when the air conditioning is not as effective as I wish. If your breathing is affecting your sleep, try propping yourself up with pillows, so that your upper body is raised.

I imagine you already know these things, but I'd say do whatever else you can do to make life easy until you have your new health insurance and you can get an appointment to see the doctor(s). Eat things that are easy to eat and require little cleanup. Use disposable plates. Do the laundry less often. You can get back to your normal routines later. Do whatever you can to let your body rest when you get home, and reduce stress. If you have an funny television show you like to watch at night, do that! Or listen to some music you like before bedtime. I like to knit or crochet if I feel up to it...I find it very peaceful. Reducing stress helps MG symptoms also, they say. I believe it is true.

Sending you many good wishes from California,
Erin

You might want to check your Doc about a sleep test, or the availability of a CPAP machine. At the support group here, all the guys and most of the women were using them. It sort of acts to help put more air into you and make it easier to breathe.

The chest/ribcage muscles are affected by MG, so breathing is more difficult. A little help might make some difference. When I was really bad, mine really helped me out.

I'm just offering what little experience I have, and my support. It helps to know you're not alone sometimes.

Yup, I have a whole list of things to talk to my new doctor about... once I find him/her

I actually was given a take home sleep test when discharged from the hospital, but it was broken, so I couldn't actually do it. I suspect it wouldn't have found much since I was sleeping so well in the hospital and feeling so good from the PLEX. Gotta have my normal level of anxiety and bodily discomfort when I try it again, lol.

Although I'm not exactly sure why one of my docs can't just Rx one and have me go get it fitted. Especially since I could have no apnea but still benefit from resting my chest muscles through the night or when feeling weak.

Hi MG_Kat33,

It is a little more complicated than that. Having a breathing machine at night can be helpful, but they need to find out first if it is appropriate for you. This means having a sleep study done first, to do monitoring while you sleep and see how your oxygen levels, breathing, and heart rate are through the night (among other things). They should also order general pulmonary testing, to see how your regular pulmonary function is. It can help them decide what type of machine you might need, whether a CPAP or a BIPAP would be more appropriate. If they think you do require a machine, sometimes they ask you to come for a second night at the sleep study center, so they can try various machines and masks, and find out which ones work better for you. It's a lot to go through, but it is a good way to make sure you get the right machine and equipment for your particular needs.

I'm still sending lots of good wishes your way.

Take care,
Erin

Thanks, ErinBear.

I'm feeling slightly better today. I think I have actually been trying to fight off a cold, of all things. I set up a humidifier in the room, am desperately trying to eat and drink more to give my body energy, and at the same time basically sitting or lying in bed and loading on Vit D and Vit C.

I know colds can become dangerous for us, but it actually makes me slightly less anxious, because I was previously fearing heart failure from my symptoms, and a cold I can do definite things to try and get rid of!

My breathing effort is already more of an "only if I think about it/something makes me think about" issue. And though I haven't had a runny nose, it was definitely very congested and today at least one nasal passage is clear, haha.

Spending the day researching PCPs, neuros, pulmonologists and hospitals in the area that take my new insurance to try to get a COORDINATED care team together as quickly as I can. AKa: PCP has admitting privileges to preferred hospitals and at least one of my specialists would be associated with the hospital. Almost impossible for all three to be associated with same hospital if you want doctors who seem experienced.

I hope you are surviving the heat!

Dear MG_Kat33,

I'm so sorry to hear about your cold! Yes, please do take extra-good care of yourself. I hope it will start to go away as soon as possible. It seems like there is something particularly unfair about getting a cold in the summer months, somehow. But hopefully with good care, it will subside, and you'll feel better soon.

Good for you, working on figuring out doctors who can help provide care when you get your insurance. I'm sending lots of good thoughts your way!

Take care,
Erin