Brittle myasthenics
 

Someone here sent me to the Autralian MG site and I found this reference the other day. Then yesterday I spent the day coming out one end and then the other from a mestinon reaction that was totally out of the blue and abnormal. I had had some weird stuff the day before but slight by comparison. Gosh that was scary. It weakened me even more so I had to sit in poo filled pants till my daughter could get here after work to help me shower and redress. My days can be so variable esp when stress is high and weather changing.

Does anyone here feel they would fall under this brittle catagory?

Annie59

Annie, I am going to talk about something and I hope you won't be offended by it. It is meant in the most caring manner.

First, you don't know definitively that you have MG, right? Or do you? I'm not saying that because I doubt you but because you need to be 100% positive that you do. Why? Because if you are a "brittle myasthenic," which few people are, then you are going to need stronger medications. And you would want to know for sure you have MG before you are given them. You don't have antibodies and EMG's are not specific tests for MG.

Second, I honestly believe something else is going on with your health. Due to the Sjogrens, I hope you will have a rheumatologist rule out things like lupus. You mentioned in the past that you had pain, which is not a primary symptom of MG. You have also said you had myositis, so I question if you have a rheumatology condition. What if you are focusing your doctors attentions on MG but what is really going on is something else? Or something else in addition to MG.

You don't have a lot of energy right now. I think it might be better spent on making a list, like Ally and others suggested, and keeping focused on having good doctoring. Don't "label" yourself, or your disease as "brittle," allow doctors to do that. Neurologists are rather odd that way - they want to be the ones telling patients what is wrong with them and not the other way around!

Have you ever considered assisted living instead of a home aide? It might be time to consider that. Then someone is there, right around the corner to help out.

How much Mestinon had you taken that caused you to have diarrhea? I'm sorry about that. Mestinon may not be a good enough drug for you if it is doing more harm than good. Again, getting that solid diagnosis would help. It almost sounds like you have an overdose reaction every time you take Mestinon.

If you are in a temperature controlled environment, the change in weather outside shouldn't be an issue. Until you go outside, that is.

If you are so bad that you cannot even dress yourself, you need more help than what you are getting. It may be time for another doctor to start fresh and examine you from head to toe, with no medical records, no clouded history from other doctors, etc. You are obviously in need of some immediate care and it does not sound like you are getting it.

It's great to lean on family but we can't expect our family members to take on the role of "caretaker." It's a lot to handle for anyone. And it's very stressful. Not everyone can deal with medical issues. Heck, not a lot of people I know can.

You need help, from professionals. Maybe even try to get a patient advocate to help you. I'm honestly afraid that your doctors are missing something. Your symptoms are just not adding up to a simple equation. Please try to get someone to figure this all out. And, yes, I know you have tried really hard to do that.

I hope you are not offended by my honesty. I hate that you are not getting care that you need.

Annie