The pain doc set up an assessment at a scary scary place. I think he is used to just taking people off the meds himself and had no idea what he was doing when he referred me. They talked to me over the phone to set up a time to come in. I asked a few key ?'s:

In addition to opiate withdrawal symptoms, are you equipped to handle a patient who walks, talks, swallows, and breathes normally one day and then suddenly decompensates in one or even all areas? He said to come in and the doc would answer that for me. So then I asked if they had oxygen. He said no. So I explained my situation a bit and how I needed a hospital and not a 12 step program. It turns out this is a psychiatric detox center and they assess you if they deem me you appropriate for the program then they just KEEP you there after they speak to you! Thank God I didn't show up! Can you imagine? I called the pain doc and told them and they are working on an appropriate referral....

In the meantime, I saw my neuro yesterday and it turns out he was out of town and wasn't getting my messages and there was all this miscommunication from his staff. He was not happy at all to hear what the pain doc said and thinks he is too severe. He believes if we can prove my diaphragm is strong, I can take a central acting med to help myself get off tramadol outpatient and he will help. He was astonished by the tramadol story and said I must be the most sensitive patient ever to medication and to side effects. And that being said, he believes that tramadol should probably be on the contraindicated list for MG--considering the effect it is having on my MG. He listened and validated me and didn't mention "anxiety" once.

We talked about the possibility of a cholinergic issue with all the mestinon I was taking and the w/drawal effects and he went over what that would look like and sure enough that is exactly what I looked like the morning I almost went back into the hospital. He totally gets it now. Thank God!!! I was sooooooo freaking out that he didn't get it and that he was going to continue to not want to be involved since he said it wasn't an MG issue at first. I am so happy. I mean WHO else is going to even understand any of this? It is so complicated.

He wants me to work on increasing my stamina for now though since my strength is great and take down my mestinon to see where my cardio issues are (if you remember the bp spikes and tachycardia were being controlled by mestinon). We are going to tackle one thing at a time. It's just been way too much. If this goes well, he is moving my IVIG from 5 days every 3 weeks to 4 weeks next cycle. Then we will look at tramadol.

Thanks for your outrage and encouragement. I really needed the support!!

debra