Annie, I was thinking about your breathing. Have you had a full cardiac workup? Such as an echocardiogram, where they put that cold gel on your skin and "look" at your heart? If not, that may be a very good thing to get done.

I'm not posting this to scare you but if no one has evaluated your heart, they can't say for certain if there isn't something beyond MG contributing to your poor breathing. Pulmonary hypertension is a scary thought but it's even worse if you have it and don't know about it.

http://www.americanheart.org/present...dentifier=4752

I have no way of telling what is going on with your health but I couldn't get this thought out of my head. I hope this isn't it.

Again, I really think you have a group of doctors who have "decided" that you are "fine" and are not doing a good enough job of evaluating your situation! You need some help and soon.


Annie

Annie59,

AnnieB3, is absolutely correct!!! A halter monitor evaluation might also be in order if you've never had one done.

Hope things turn around for you soon,
Rachel

AnnieB3, Thank you for the thought. Cardiac was one of the first places that was checked because I had weakness and breathing problems and chest would ache at times. The first work up was late 04 or early 05. They did what you explained and I had the cardiac stress test on the treadmill. They gave me the chemical stress the without my permission as they didnt think I could walk long enough. That was horrible and a BIG bone of contention with me as I had specifically said I would walk long enough and didnt want the injection version. Since then Ive had lesser check ups that inculde what you suggested 4x. One was in 2006 or 07 when I had a breathing crisis come on and went to ER.

The most recent was in 2008 and that was another treadmill the local pulmo ordered after freaking out big time when he reviewed the results of the pulmonary stress treadmill he had done. They called and said I had to be seen immediately because he thought I could be having a cardiac event. I can lookup what the report said exactly. That DID scare me and my daughter took off work to rush me there. The great cardiac doc wasnt there that he wanted me to see so this young guy saw me and put me on a treadmill again. His report said I was just deconditioned. Now given I had been working and had as active a summer as I could given it was my first on mestinon and I didnt know how hard the heat on me was I found that ridiculous and him not the right doc. I was in really bad shape the day I saw him as I was still recovering from the treadmill. You can immagine. those big tests really take me down. So in the cardiac area I have been cleared more than once.

I called the univerisity today to just be sure that my pulmo report was gonna get to my family doc here in town. For some reason which I am afraid has to do with that neuro saying I should direct all needs to my internist the person put me on hold at the main phone bank and I sat for the better part of 3 minutes just waiting for my request of talking to scheduling! This happened once before when I went thru and MRI and the scheduling became messed up and they stopped forwarding my calls to that department as I was the one blamed for snafu. What a mess. I have tho since I saw the neuro talked to my pulmo briefly on another matter so I know I can talk to him if I need to. He gave me his direct number a few weeks ago (to his secretary who is very nice).

I have been sicker so I will post separate about that. That is why I have been away.

Annie59

It's the holiday season, so it may only be that they are short-staffed right now.

When they do the stress tests, they don't look as closely as the valves and chambers as they do during a regular echocardiogram. They look at your heart under stress. Maybe a 2nd opinion with another cardiologist, not in the same group, to take a look only at your heart - not during a stress test. You have to be sure that it's not a player in all of this.

I hope you will get ALL of your records. You need to know and understand everything going on with your health. There are things doctors do not always tell patients, believe it or not.

I'm sorry you haven't been doing well.

Annie

The university just started patient access of medical records. I was given the sheet with my code last visit. I signed up and was able to review the few blood tests the neuro did that had returned. She did mitochondrial tests that she said would take a month. There was one abnormal in the basic ones. I think it was a urea one but not sure. Last days have been alot.

I have had paper copies of many of the doctor reports. Early on I was seen as needing a psych consult when I told the virologist I saw for a second opionoin on the CMV that was locally diagnosed back in 2003. I told him how much water I needed to feel anywhere near normal. He told me to log how much I was drinking. When I saw him again he had this same disregarding look and said he had a few referrals. He wanted me to see someone who was a specialist in somatic disorders. I knew better and never went. That was in 2004.

In 2006 I saw my current internist for the first time and she immediately said about all the water "oh thats sicca!" She treated me respectfully and ordered the consult for the lip biopsy and the blood tests to confirm Sjorgens. That was a big turning point for me as I had been treated 'crazy' around the water thing by at least 5 doctors. It is amazing how many will bias assuming that because I had a trauma in my past that if it isnt easy for them to find it must be part of that. But the really galling thing is that they dont have the balls to sit there and ask me if I had treatment for it. I finally had my former therapist write a letter in support of this issue. That I did the work and that is not the issue. People who dont do the work, dont do the recovery are the ones that are more likely to have somatic health issues.

This university doesnt do well with trauma in a general standpoint. They are not a place to go for treatment if you did have it. A friend shared with me about a year ago that a soldier was seen down there and was having clear flashbacks yet they diagnosed him as malingering and said he was released to go back to the front now that his other injuries were healed. This made me sick.

Annie59