The Dilemma

A while back I posted how frustrated I was with that week's doctor visits. I didn't go into detail because I had something positive to talk about and didn't want to lower my mood with this. But I'll finally get to it now because it explains a lot in regards to the status of my health which is not good.

I have MG. I have POTS. I have mg AND pots.
Dr. Awesome turned into Dr. not so awesome anymore.
The end.

Just kidding. But that really does pretty much sum it up.

I saw my pulmonologist on Monday of that week. It was an extremely frustrating visit... not because of my doctor and certainly not because of the respiratory therapist, not even because of the receptionists. Why? Because of the resident or fellow or whoever he was assisting my doctor that day. Sometimes I get really good residents who really know their stuff and seem extremely interested in knowing more. This one was horrible. He was horrible because he made me feel horrible. He acted as if he knew it all. ALL. When he clearly didn't know a thing about MG or POTS. He asked me all of the questions I've been asked a billion times before but in a very condescending I am right you are wrong type of way. He pretty much argued me on everything I said when all I was doing was answering his questions truthfully. When I talked about my ox sat dropping after being upright for a while and walking he told me to stand up and immediately tested it and then proceeded to tell me it was normal. Um, duh! I said after standing or walking FOR A WHILE. He then said something along the lines of he doesn't know why I'm here and that they really can't do anything for me! Excuse me?! I'm here because my pulmonologist who happens to be head of that department told me to come for testing and a follow up visit, who told me my breathing is being compromised by MG, who told me I need to be monitored. I then got short in my replies to him and said "Am I going to get to see my doctor?" He said yes and that he would "fill him in". Excuse me but I'm pretty sure my doctor knows much more of what's going on with me than you do. Unbelievable. I hope I never see that resident again. It's people like that who should not be in this field. I left there that day feeling horrible, bashed and attacked.

Thank God it turned around a bit when my pulmonologist came in. Yes he did know what was going on with me, he does see a reason for my being there, and he treated me with respect. My pulmonary function tests were repeated and everything was about the same... good and bad. Nothing got much worse, but since the last time which was in May, nothing got better... including the tests that correlate with MG which were in the 20th and 30th percentile. BAD!! Last time I met with him, the thought was I would be put on immune suppressants so by the time I came back they would have kicked in and my MG and thus breathing would therefore have improved. But I haven't been put on immune suppressants so that didn't happen. What he wants to do is put me in respiratory therapy/pulmonary rehab... but not until my MG is controlled because if you work out my diaphragm without my MG controlled that's the same as exercising my muscles- it makes me worse, and in the area of my lungs it risks moving towards crisis. He understands this. I understand this.

Who doesn't understand this? Dr. Awesome aka Dr. not so awesome anymore. I had that visit that Friday of that same week. I'm annoyed because I was sent to him for the purpose of POTS. I am VERY thankful he put it all together and diagnosed me with that so I at least have an answer to what is going on. But I'm annoyed because when he did that I asked him if I should keep my appointment with dr so and so, the MG specialist. His reply "No. I treat that too. I can treat you for both." So I canceled that appointment with dr so and so, the MG specialist, whos wait time is many months out. Bad move. As soon as I did that Dr. not so awesome anymore kind of changed his views on everything. He more and more insists I'm not affected by MG. Are you kidding me??? If there is anything I've learned in the past 3.5 years of illness, it is I have learned my body! I have also done an extreme amount of research. Furthermore, after now talking with others, I've learned that others have been in this same situation with him! They have already been diagnosed with MG, they are told a treatment route, he diagnoses POTS and disregards and even removes their MG and MG treatment!

IF POTS is affecting me in a neuropathic way, it would be that the outter areas of my body would be more affected- hands, feet, etc. I absolutely do not match that. My muscle weakness is strongly focused towards the center of my body- back, abdomen, chest, upper arms, neck and upper legs. My swallowing, chewing, smiling, talking and vision have also been getting worse- all MG symptoms. My hands and feet, as I've been told many times before- which would be POTS related, are incredibly strong. Furthermore, I've been tested positive for MG 3 times by blood test and 2 times by EMG/nerve study. I have NEVER tested negative. Furthermore again I have had severe reactions to the meds on the "be cautious with" list for MG. Furthermore AGAIN I responded positively to plasmapheresis and mestinon in the sense of increased muscle use/strength. It's just unbelievable really that I have to go through this all over again... the doubt of doctors. I should not have to go through this again and again and again and again. I HAVE MG. And every doctor who has ever thought I didn't eventually came to the conclusion that I in fact do. I'm starting to think they do this either 1. to try to keep you sick and coming back or 2. to repeat unnecessary tests to make money or 3. because they really are clueless as ever about MG. Do I need to find ANOTHER neurologist? This is insane.

And so right now my pulmonologist and neurologist are butting heads and I'm siding with my pulmonologist- it's MG in regards to my breathing and muscle weakness, not POTS. I have POTS but POTS is not causing my breathing problems and muscle weakness. POTS is causing my dizziness, lightheadedness, nausea, trouble digesting, tempurature regulation, high/low heart rate, high/low blood pressure... everything but that which is MG.

So right now, I'm in essence, not being treated... at the worst possible time to not be treated due to other stressful happenings in my life. This is why I'm not only not improving but have next to no chance of improving at the moment. People who improve are people who are properly treated with medication and/or plasmapheresis etc. Mestinon sends more signals from nerve to muscle so to try to allow my muscle to work better/longer but it does not treat the disease. (It would be like taking a pain killer for a broken bone- it might help the pain but it's not treating the broken bone.) So it's as if I'm living with MG without seeing a doctor when I've seen more than I can count. So no, it's not that we're trying to figure out the right meds. It's not that meds aren't working. It's not that we're "waiting" for something to kick in. It's that the doctor is not properly treating my MG! This is not good because although those who don't truly understand MG may disagree, it's been shown that MG IS progressive. And I've felt it. Clearly since I went from still being able to exercise/play sports in the beginning, to occasionally do that, to not do that but do housework, to rarely do housework, to rest basically all day because my body won't do anything. It's progressive and if it progresses any further I may as well be in a nursing home. It's dangerous that I'm not being treated. And my POTS isn't being treated either since we tried 2 things, both failed, and I guess he therefore gave up.

And thus, after that week, I felt so defeated. I felt back in the middle of the circle of doctors who can't figure it out, when it's already been figured out. Stop trying to diagnose that which has already been diagnosed.... many many times! Yes doctors it's a rare disease and it sucks that I have it, but I DO, so treat me for it!!

I'm ready to just up and move, again, just to find new doctors who will believe me, again. I almost feel like this is a lost cause. Jailed within my own body and no one will let me out. At least I have the Spirit of God within me so I'm never alone. This is how I get through each and every day...

http://www.youtube.com/watch?v=ndrj9Su0Azk Please listen to this. Hold on to the only one who can get you through.

Thanks for reading and allowing me to vent on this without judging me for "being negative." I'm a positive person who has negative moments. We all do. Let it be and let it out, and praise God through it all! Prayers for this and the other situation are much appreciated! Restoration on all accounts! Thank you!