It doesn't matter what the doctors said (no offense). Do you HAVE the test results? If not, get them pronto. That is your legal right, as a patient. Stop "asking" doctors about it and "demand" the medical records department get them for you. Any doctor who disregards a positive test result is not worth their salt. Everything needs to be taken in while looking at the WHOLE picture of someone's health.

Again, you need to know exactly which of the three CK tests it is. If it is the cardiac test, then you need to see a cardiologist. If it's the muscle test, you might need to see a rheumatologist because they are the ones who deal with polymyositis and other inflammatory diseases, not neurologists.

Some diseases can temporarily respond to Mestinon/Tensilon. I know this is a tough subject because you said your Mom had ALS but that could also be a possibility. Some ALS patients present like MG patients. Though MG is thought to be a "head and down" disease while ALS is thought to be a "feet and up" disease. HOWEVER, there was an amazing woman I knew of years ago who thought she had more bulbar MG but had a variant of ALS. She is gone now, which rips me open to think about because she was so amazing.

I hope you don't have ALS. But you can't ignore that it might run in your family. Has anyone else had it? Did your Mom have any genetic testing done?

So you need to be sure of what is going on. Any doctor who pooh-pooh's what is going on is stupid. I don't have patience anymore for doctors who are so cavalier about patients. Your doctors have not "finished" their job of helping you. Who among us (of those who can work) could keep their job if they left it half-finished?

Now, about all of this anxiety talk. KNOW what the symptoms of anxiety are. You may or may not have anxiety. You could also have panic attacks, which does not mean you also have an anxiety disorder. They do not necessarily coexist. I think seeing a psychiatrist is useful only in that you can determine if either of those things are a mitigating factor. That does not mean you can't have both a disease and a psychiatric condition. A good doctor can figure out the differences. I'm sorry, Alice, but I don't buy the BS about not being able to differentiate between them.

Psychiatry and neurology need a divorce.

I have PTSD but do not have an anxiety disorder. A specialist knows the difference. My PTSD is from medical traumas. I understand what it is and what to do about it if it rears its head. It can happen even when there isn't an obvious trigger. Being prepared for what is going on with you is half of the battle.

The bottom line is that you have to know exactly what is causing your symptoms (more than one thing, possibly) and THEN get treatment for whatever it is.

I'm sorry you are going through all of this. I know how hard it is to not have answers. Hang in there.


Annie