Doesn't matter the question, the answer is always anxiety.

I'm really annoyed by my doctor's visit today. If you don't care to hear it, skip to the bottom for an update. But I'm sharing because there is no point in attempting to spread awareness if you don't bring awareness from every angle. I think today's doctor's visit exemplifies what many MG patients struggle with constantly.

Disclaimer- this doctor is known to be an excellent doctor, I know he is highly intelligent, and I think he's a very nice person in general... BUT today he did what many others have done to me and that really annoys the heck out of me almost to the point of wanting to find a different doctor.

I brought up to the doctor about the sensory overload issue and how it's been happening more and more. Now, fyi, I've already discussed this with other MG patients and MANY of them have this same problem. I don't care if it's not "supposed" to happen to MG. There are a lot of things that aren't supposed to be a part of MG and yet somehow, many many many of us MG patients have the symptoms. How do they make new scientific discoveries every day? Maybe someone needs to start doing some research on this and re-evaluate what MG really consists of or what can happen along with it. Some have received a diagnosis on this sensory overload that I can't remember the exact name of, but others just deal with it because doctor's just don't know or shrug it off... drum roll please.... as having anxiety.

Oh how I love that word, anxiety. NOT. Now, I do have anxiety, and because of that I know the difference of when I'm having anxiety and when I'm not, and at the same time my anxiety has much improved as my faith has become stronger. For over 2 years I got written off as "just having anxiety." Guess what? If I listened to that, I probably still wouldn't have my Myasthenia diagnosis. Guess what else? My breathing trouble after surgery was written off as "just having anxiety." If I listened to that one, I wouldn't have a pulmonary embolism diagnosis... because I wouldn't be here right now. What I'm saying is just because I have anxiety doesn't mean anxiety is the one and only answer to every single thing.... it's not, and I've come to learn my body very well.

So anyways, when I brought up the sensory overload issue, what did my doctor immediately respond? Anxiety. Awesome. I tried to calmly and respectfully explain everything but it was almost like it was in one ear and out the other, his mind was already made up. He then proceeded to call me over to show me something. What did he show me? My list of "allergies" to medications telling me that any doctor that sees that is immediately going to chalk up a patient to anxiety. Excuse me! I have had serious reactions to 2 and only 2 of those medications and made that very clear. The rest of those medications are on there because I gave a doctor a list my neurologist- another DOCTOR- gave to me to make sure all doctors know they CAN bring on MG crisis- a "be cautious with" list. It even says that on the paper. I never said I had allergies to any of those, I never said to enter them in the system, but it was THEIR physician group that did so. Not me. And when I tried to explain this, again, nothing like he didn't even hear me.

What made me more frustrated was the following. He started to tell me I am a young, attractive, intelligent person (no that's not the part that made me frustrated)... and that I need to get out there and meet "people." Excuse me but I am wearing a wedding ring. That's all I'll say about that BUT this led into a short discussion about faith and God and I made it very clear that I stand by my beliefs. When he started arguing me on that, it was like "oh no you didn't!" I kept my cool you know because otherwise I'd be playing hypocrite. But basically he started telling me how I need to live my life... to the point of saying I really shouldn't do anything having to do with MG. What?! I have turned something negative (MG diagnosis) into something positive (promoting awareness of a rare disease)... and you're telling me I shouldn't?? No wonder no one knows about it! I straight out said to him "If I am doing something I enjoy and I am content, (assuming I'm not hurting anyone in any way in the process) what does it matter?"

I then explained how I want to go out and do stuff with friends more often but my Myasthenia prevents that from happening. He argued that it's not preventing me! What?! Do you live with me? Do you feel what I feel inside me? Do you struggle to walk up stairs and dry your hair and do your own laundry? No? Then don't tell me what it is and what it isn't. He then started arguing that my shortness of breath that gets worse the more I do is also anxiety. I explained on the pulmonary function tests my breathing level in regards to MG was 25% and 35% and I was told by the pulmonologist and neurologist that MG is what is making my breathing worse. In one ear and out the other again. Ok so now even facts on paper, medical tests showing percentages, mean nothing? Alrighty then.

I know my body, I know my beliefs, and no one including a doctor is going to change that. God has been my rock through all of this and there is no way, no matter what, anyone will bring me astray from God. And if you're going to argue me on that, I'm just going to defend my faith even moreso. Maybe next time I'll start preaching to him... just kidding I know that's not the right way of going about it.

I knew this was a useless battle to fight, other than standing up for my faith. And so you know what? I didn't even bring up that my ankle has been hurting me. It could (not saying it is!) be a sign of a clot developing. Clots can develop while on blood thinners especially if not in therapeutic range...and well we don't know if I'm in therapeutic range since he decided we don't have to check my INR today but wait another week... even though it's been bouncing all over in and out of therapeutic range. But because every single thing I say is chalked up to anxiety, I didn't even say it. So I'm just hoping I twisted it or something even though I don't remember doing so and that it goes away on its own.

Anyways--- now to the UPDATE part for anyone who is skipping straight to this--
They want to start me on an immune suppressant instead of waiting since my breathing has been bad and my MG worse than before. Before doing so they had to run a bunch of blood tests because this stuff can really damage kidneys, liver, change your blood count, etc. etc. So everything has to be normal before starting it. Well for some reason they also tested my vitamin D level. I know it's been consistently low but I've been taking supplements. Well, it was the lowest it's ever been getting into dangerously low. Low vitamin D can cause many of the symptoms I'm experiencing (but nevermind that's just anxiety... kidding). So, over the counter isn't good enough any more. I need to start on 50,000 IU per week to jump it up... prescription strength. Yikes that's a lot. Hope this works and moreso, hope it gets rid of a number of these ongoing symptoms. Fyi if anyone is unaware, though I like being outside, being in the sun/heat is very very bad for MG so that's not an easy answer for me to help bump it up.

Good news is my ANA which is a blood test that relates to autoimmune diseases... is negative!! I am super happy about this for the reason that as long as I've known it has been positive! In addition, the tons of other blood tests ran besides a few little things here and there, are the most normal they have ever been since my initially getting sick! And so I wonder, did Texas really have something to do with all this!? Or could it be removing my thymus kind of readjusted my body- other than the one thing it was supposed to help- the MG lol. Who knows, but it doesn't matter since good news is good news. Keep it up body, keep improving!! Just start making me feel better too now!

I did get some bad news recently. When I had previously posted that all my blood tests for blood clot disorders (other than autoimmune blood clot disorders that can't be tested til I'm off the blood thinners) were negative... well, I wasn't told that they weren't all in yet. And thus I recently got the last two pending results. I do have a blood clot disorder. So, that could have played into my getting PE as well as it being a complication from surgery. What this means is I am more likely to clot than most people... actually only 1-2% of people have this so once again I'm the lucky rarity. But, thank you God, apparently this disorder is not quite as bad as having other ones and thus it is not required that I be on blood thinners for life! Hallelujah! I will need to take blood thinners for any long car/plane rides or while in the hospital or anything that puts me at more risk of developing a clot... but at least it won't be for life, as far as we know now at least. Thank you God!!

And so we have it, not much has changed. My body continues to not cooperate with me but I take it as a good sign that my blood tests are becoming more and more normal. Hey who knows, one day I could wake up and find myself in remission. That is my prayer for all this.

Thanks for reading. If you're struggling with anything, keep your head up... because even I can... even if it means wearing a neck brace when my muscles are weak like I am right now :)