Thanks Annie...I definitely am getting copies.

I got a call from my primary care physician's office who referred me to a pain specialist after hearing the story. The specialist is waiting for the referral from the office and then will call me to schedule an appt.

Last night, I FINALLY got a call from a receptionist at my neuro's office that said, "The doctor said that since your issue does not directly relate to Myasthenia Gravis, you need to consult with your primary care doctor regarding this matter." I was so stunned. It was so cold and out of character. I mean my last note to him said my primary doc asked me to call you to discuss this matter. I didn't know what to say. I mean, what the heck was that about? This is a doc who had been running allergy tests for me!!

I can't wrap my brain around my doc saying this all doesn't concern him. Is that true? I mean, I couldn't walk on and off for most of the week and was choking with a hoarse and weak voice and had major breathing issues. So I am confused. The cause could be systemic stress from withdrawl of tramadol exacerbating MG sx. And if that is true, then I suppose it's not his problem?

But as you were saying Annie, if I had too much mestinon and that is what might have been causing the breathing to become worse each day----or the w/drawl of tramadol caused a flood of acetylcholine----doesn't that concern my neuro?


How can we know for sure?

debra

Debra,

Who wrote the script for the tramadol to begin with? I'm guessing it was the neuro and I'm guessing he is trying to distance himself now that you have had difficulties with it. Since your primary seems to be more astute on this matter, I would work everything through him. Let him know that as per his suggestion you contacted your neuro (who blew you off) and that if the primary wants you to consult with neuro would he please get with neuro first about WHY he wants neuro to see you...since tha's the only way the neuro will take the apt.

(Amazingly, in my experience, when you are able to point one doc to another doc, issues seem to disentegrate like kleenex in the rain!!)

My surgeon's on call doc wrote the script for me when oxycodone was not controlling the pain when I got home from the hospital after my full open chest thymectomy. I have no pain now and have been off the oxycodone for two months.

My primary's on call doc didn't say a whole lot about tramadol--just to call my neuro so he knows the situation and that she was referring me over to the pain specialist who is supposed to call me for an appt.

I wonder if the pain specialist will want to consult with my neuro anyway about whether I was getting too much or too little acetylcholine--bringing him on board?


Thanks, debra

Debra, I am catching up and wanted to see how you were doing. I learned the very hard way that some meds have severe, really severe affects that docs just perhaps know about yet or seen enough, perhaps get lost in the system.

I have tried to report what happened to me thru channels of the FDA 2 times and was unimpressed. It took me years to get off Paxil. Years! I was down to half of a pill of the lowest does every other day yet when I stopped it I knew I had to not have anything to do but stay home and be prepared for the consequesnces for at minimum a month. I think it was 3 months before I started to really feel faily normal. Some of it was physical things especially the first 6 weeks. Strong physical stuff. But the most surprising was, and blessing, that I completely escaped the agoraphobia that the Paxil caused. That pill stole several years of my life. My brain wasnt made for it for sure.

I had asked my shrink for another antidepressant because the Paxil demanded I be on so much valium or lorazepam to sleep and not be constantly thrown into a state of anxieity over nothing. I asked if changing me to Serzone would help. He did and told me to go off the Paxil one day and over the next 5 days slowly increase the amount of serzone. By day 3 I was on the floor of my apartment buidling crawling out the door calling for a neighbor to take me to the ER. I was wretching over and over tho there was nothing left in me. My head was in horrific, explosive pain. I was hospitalized.

Annie59

What a scary story Annie! I am so you went through that but it gives me more info about how some people, including me, are just more sensitive to meds than anyone understands. And it plays into the story from last night.

I was talking to a friend about how to get off this med and she asked an impt question: is it impt to ever get off it? It is such a low dose at a half a pill per day(25mg/day) and I am having serious breathing problems without it....what if I cannot be transitioned off of it or it is too unsafe to do that? What would that mean?

Also, yesterday I learned that tramadol is a central nervous system depressant which means that it is contraindicated in MG. You think someone would have mentioned that to me!

These are great questions for the pain specialist. I have not gotten an appt yet so I really hope I hear tomorrow since I called on Friday for an update and did not hear back.

I am still doing well, actually, I am doing BETTER than I have since I started trying to get off of tramadol. Oh, the irony.

debra

Debra,

Got o Wikipedia (or link to it from a search on tramadol) - pretty good explaination there of how it work, adverse reactions, dependencies, withdrawal, etc. May give you some ideas for questions to ask pain specialist when you have your appointment.

FYI - keep paging down on the 'article' as it is quite long and appears to be at the end before it really is!

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

Debra, This guy sounds smart and sensible. You do NOT want to be on this drug forever. OMG. It may not take a long time to get off of it. They have to give you a drug to get you through the withdrawal. And they do have to monitor you!!!

I personally like the way he is talking because he is being honest and real. Yeah, it's tough. And, no, you should never have been allowed to be on it for more than a few days. Ticks me off.

I hope you can figure out what's good for you.

Annie

Debra -
As sorry as I am to hear your news - I am super excited that you have found a GREAT pain doc. He sounds very knowledgeable and forthright. He would be the one I would want to go through this with.

I urge you to take the next step and go to the withdrawal center to meet with them and see what kind of program they recommend, what their knowledge level is of MG and how it might impact the withdrawal, etc.

Until you have this info - it will not be possible to make a fully informed decision. I'm so outraged that this happened to you - - they never should have let you be on this drug for so long. But now you have to investigate what it will take to detox from it.

Good luck - and pls. let us know what you decide.

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