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I am also newly diagnosed, I am also so confused about what I am supposed to do and how bad does it need to get before the doctors change meds or whatever they can do. I take 90mg mestinon every 3-4 hours plus an extra 60mg in between if i can't breath, 50mg prednisone daily, starting Imuran today, have had 2 5 day courses of ivig in the past 2 months. I live in a very rural area and doctors here don't seem to know much about mg. I am traveling 2 hrs. away to see a neuro. i can't keep my head held upright for more than 10 min. very short of breath, choking on my own spit, and my vision, when I can keep my eyelids open is horrible. The doctors have never given me any info on mg or said if this or that happens, do this. i just wonder if anyone else out there has had this experience, and how they handled it?
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Hi, wvfox, and welcome! I didn't want your questions getting lost in the other post. MG can be overwhelming. This is a great place for information and support. When did you get diagnosed?
Was it the doctors who don't know very much about MG who said to take an extra 60 mg. in between doses?
Can you explain that more clearly? Do you take another 60 mg. during that 3 - 4 hour time period? If so, you might be overdosing.
If you get too much Mestinon and, therefore, too much acetylcholine, you can have a cholinergic crisis. That's where you have too much of it getting to your muscles and they get weaker. More is not always better with Mestinon.
What happens with too much is that the neuromuscular junction literally gets flooded with acetylcholine. It's dangerous and just as bad as an "MG Crisis" where you don't have enough of it.
How do you feel 30 minutes after you take that extra dose? Is it generic Mestinon? Is it possible for your docs to switch you to Brand Mestinon by Valeant?
If there was ever a good case for home health care, it's living in a rural area. Does your insurance allow for you to have IVIG at home?
There are a lot of ways you can monitor your MG. You can have an oximeter at home so that you can know what your normal oxygen/O2 saturation is and when it gets worse. You can get a good pulmonologist to do breathing tests to see what your baseline is or how badly you're doing. They are an integral part of MG care - not only neurologists!
When you can't swallow (i.e., can't intake food or liquids), can't breathe in or out well or can't move some muscle groups or have generalized weakness where you feel as if you're walking through quicksand, it's time to dial 911.
What you are describing sounds like an exacerbation, which is one step away from a crisis. And the problem with MG is that you sometimes can't tell if you're headed that way and it can happen quickly.
It sounds like your doctors are doing the basics. You're on a pretty high dose of Pred. When did you start that? Did they give you any directions like to take extra vitamin D3 and Calcium? Or take flax, krill, olive or fish oil? Did they give you any precautions about Pred like to watch your salt intake? Anything?!
If you have questions, please ask!
It sounds to me like you need more help, like more IVIG. But ask, again, if you can have it done at home so that you don't have to wear yourself out by driving 4 hours. Don't hesitate to get help, okay? And stay out of the heat because that will make you much worse.
Do you have someone at home with you?
Let us know what else you need. I'm sorry you aren't doing well.
Annie