Thanks Annie,
I am so confused and upset I guess., I am not sure if I like this man or not, I have no one else to compare him toooo.......
I just came back from the pharmacy and they said they gave me the 60mg but I have to break it in half as the doctor ordered 30mg tablets and they do not make them...shouldn't he have know that if he takes care of people with this? Or am I just reading too much into this? At this point , I feel like just not getting the CAT scan with this Doctor and just going to another and starting from scratch , I just don't know......Any suggestions., I guess it wouldn't hurt to have the test and see him again and go from there? And question him exactly about the test and pulmonary doctor? It is just so hard as I am knew to this area and my GP is new., and I just don't know., I wish I was back in Pittsburgh, , but I am not ....
QUOTE=AnnieB3;499310]Whirlwind, It is your right to do whatever it is you want to! If you don't want an EMG then don't ask for one. If you feel comfortable with this neuro, than stick with him!
I wasn't trying to change your mind. I was trying to show you what "could" happen if you don't have all the MG tests right away. They can always do an EMG later but, like I said, then you would have to go off of drugs for it to be accurate.
If you get worse in the next few months, etc., then they may have to put you on more drugs. Then withdrawing from those drugs to do an EMG would be difficult if not dangerous. Some neuros argue that if your MG is bad that you don't have to be off of drugs before you have one. The people I know with MG who have had an EMG or SFEMG while on drugs have had a negative one. Then they go off and it is positive.
The good neurologists I have known also like to know what your "baseline" EMG is, even if it isn't positive. It's just as important to know where you've been with MG as it is to know where you are when you are worse.
Along those same lines, it is also important to be evaluated by a pulmonologist. They are the ones who can monitor your breathing if it does get worse. Again, knowing what "good" baseline breathing tests are for you will help them to compare when you get worse.
As for every little ache and pain being MG, it may or may not be. When I started feeling tired in 1997 to 1999, MG wasn't even in the picture yet. It turns out that I had both MG and a vitamin B12 deficiency. The B12 def. was treated but then I was still weak and short of breath. So you can have more than one thing going on at a time. I'm not saying this so you'll think you have more than one thing going on. I'm saying it so that you won't attribute every new symptom to MG, just "in case" something new is going on.
DO NOT stop a drug without talking to a doctor first, especially not Lipitor. A discussion is warranted, however, now that you have MG. It can make MG worse. There are ways to go off drugs, if that is what your doctor recommends, that are slow and won't be abrupt/give you side effects as much.
If you haven't spoken to an endocrinologist about your diabetes, then you should. They might be able to get you off of meds by diet and/or mild exercise. That may also reduce your cholesterol level.
While I disagree with Becky on this one about having ALL the MG tests right away, it is YOUR decision to make with your doctor. I have just been through too much, seen too much and know how doctors can go back and forth on a diagnosis if you don't have "all" the evidence (i.e., if you see a new neurologist at some point).
Just try to relax, take this one step at a time and learn as much as you can! You'll be fine. It's very overwhelming to have a new disease and it's going to take some time to get used to it. Give yourself a break!
Annie