Hey Rachel! Thanks so much for your encouraging words. I have to keep remembering how blessed I am for having my neurologist in Indianapolis and my PCP here in town; both of them are wonderful, caring doctors.

I'm glad we all have each other because if I was alone in all of this, I would be in bad shape!

Thanks again!

Abby, Thanks for your reply. I agree, this doctor doesn't feel as if he's qualified to treat me. And, while he actually did, more or less, have the guts to say that, he had to throw a few words in there about how some of this could actually be my fault! That, I could have done without.

Honestly, I am going to become some sort of advocate, somehow for women in healthcare. I don't know what I can do, but something needs to be done to change this system we have of blaming the victim and of doctors not doing what we've hired them to do. I am woman hear me roar! lol

We can all be a little hopeful in that we can learn so much from each other. That's one thing that keeps me going.

Thanks again.

Annie,

I'm so sorry for what you've gone through. I thought these HIPPA laws were suppose to help protect the patient. Honestly, I think some in the medical profession just do whatever it is they want to do regarless of the laws.

Stay strong!

Do you think perhaps there is really just one neuro and they've cloned him or her???? Maybe that's why so many of us keep hearing the same line of bull!

I'm sorry you've had troubles with them too. It's just not fair!!

I wont ever give up!

Yesterday was my first day in a month or so that I didn't take any Mestinon. I did have more trouble swallowing and a bit more weakness, but it wasn't that much more noticable. I'm sort of experimenting to see if I'm having a "placebo effect" from the Mestinon or not (I really don't think that I am though). My breathing is what concerns me the most. I had some pretty scary symptoms related to shortness of breath pre Mestinon.

I do think this may take more than a few days to figure out. For one thing, my symptoms were pretty variable. So, yesterday may have just been a good day for me. If I'm having an especially bad day, then take a Mestinon that might tell me more.

I guess I want to prove something to myself and the obnoxious neuro. I know my PCP wants me to be on the Mestinon. I think I will try to get in to see him in the next week or so to discuss all of this with him.

I'll update you all in a day or two, sooner, if I reach any conclusions (hoping that doesn't mean a trip to the hospital!)

So, does anyone have any thoughts on what I'm doing? Is it a good idea? Could it really givie me useful information? Thanks for your support

It is getting worse with doctors not having the time to spend with patients. One family member came back from a doctor's visit saying his doctor had a new sign up stating they can only talk about 1-2 things per visit. Huh? Sometimes the solution is in seeing the bigger picture which may be 5 seemingly unrelated problems that really are pieces to the same puzzle.

Shalynn, firstly I am on this mission too:
"Honestly, I am going to become some sort of advocate, somehow for women in healthcare" I am by nature a fighter or I wouldnt have gotten as far as I did. Someone told me from an MG organization that I may need to dial it back as many doctors DO NOT like patients that come in prepared, well researched and powerful. I guess one could say they want to be the 'the god' in the room. Well I have gone in weak as a kitten for the last few appointments because I have just been so much sicker. Certainly there has been no improvement infact me trying to make my case for MY truth of day to day disability end of 09 and beginning of 2010 seems to have sealed my case. Unless I get a doc like my pulmo ( and keep my pulmo from caving from the pressure) I am pretty much lost for any hope of diagnosis locally. If the neurology wont do a tensilon test based on what my highly respected pulmo said on the record even he isnt helping. I am unfortunately clear that I would have to have a devastating MG crisis for even a possible chance at diagnosis.

Lastnite I was thinking of my pulmo asking me if breathing worse wakes me at nite. He has asked me that more than once. I have had to say no. The truth I realize is that after these 2 plus years since the first crisis I "know" very closely where and what is gonna send me to the bad place, to the hosp. I dont do those things. Or if I have to do alot, a situation where I know it is risky I know to shut down and stop. I may be already in pretty bad shape from a family gathering or a trip to univeristy but I can recover. I learned in summer of 09 during another hosp that locally they have no clue and even getting some univerisity docs involved doesnt help. They called my internist and my family doc and not one of them told them to test my breathing. NOT ONE!!!! In fact a nurse walked me around intentionally to test me. That sent me into worse breathing yet they left me in an ER room alone and did not answer 4 calls with the bedside buzzer. I cried. My daughter had brought me in but had to go pick up her kids so she wasnt there to make them do the right thing.

I was hospitalized but still not given any tests. In the middle of the nite when my breathing was keeping me scared and unable to sleep I finally asked a nurse to get me ice packs to put on my chest. I was in the hosp and had to take care of my self!!

I am getting sad. Have to sign off for now. Mood is down today. I am scared. My body is so sick and I dont even know who to tell. Who will reallly help in an honest, caring fashion rather patronizing me.

Annie59

Jaspar, It's bad enough that sometimes appointments only last 10-15 minutes, or the doctor is 'double booked' but limiting the amount of things you're permitted to discuss seems like an all time low! It isn't easy being a patient!

Rachel

Shari, Good Luck" with your experiment!

Be sure to let us know how everything goes. Sending good thoughts your way!!!!

Rachel

Shalynn, Say I just wanted to say that tho testing your mestinon this way may seem a little risky I respect that you need to know. I was gonna post something about people changing mestinon doses. I had a nurse go nuclear on me when I said I had changed mine without doctors persmission.

I look forward to hearing how this goes for you. I have learned that as long as I have my mestinon handy I am pretty safe. But it is good to have a plan, to have a family member know if you are changing doses or just worse for that matter in case you need a doc.

PS sorry my first message turned into a rant.

Annie59