I got in on a cancellation to the pain specialist yesterday. He was very responsive and seemed to have worked a lot on getting people off of tramadol and had a couple of MG patients. He had not seen what I was going through though.

He said tramadol is seen as a dirty drug in Europe and very addictive and classified differently there than here even though I was told not to worry about it. He puts people on central-acting meds to help them with withdrawl sx but cannot use any of those meds with MG patients and esp. when I am having breathing issues. Usually he tells people you will feel like hell, probably the worst you have ever felt in your life, but you can do this on your own and it won't kill you. "I can't say that to you." I about cried.

He said I have two options. Stay on it forever. Or go to inpatient detox for a long time so they can monitor the withdrawl. Awful options. He said I shouldn't be on a med I don't need so I should at least go to the center and hear what they have to say. My husband thinks I should wait til I am stronger to even consider the idea.

Who wants to go off a med and feel the worst you have ever felt in your life and not be able to take anything to help and maybe die? I don't even know if they will understand what is happening to me. Are they even set up for respiratory problems or know anything about MG?

The doc said he thinks it was affecting breathing in 2 ways: from the tramadol standpoint and from the MG standpoint. Clearly, when I was choking and not breathing right the mestinon helped some. Also, when I added the tramadol, I no longer needed any extra mestinon. Therefore, both are an issue. I need to be taken care of from both sides of the equation. It is very complicated.

So, I went from getting no response from my doctor and the hospital believing it was anxiety to needing to get off this med either not at all or inpatient. I have no idea what to do.....debra