a big ol' mystery ...

That's what I am.

Those were my doctor's parting words this morning {after a two hour appointment!}. Not super encouraging.

Be warned: this post may be long, over-informative, and a jumbled mess of thoughts.

Do I have MS? Not at this time. Quote: "I don't think that you fulfill diagnostic criteria for definite multiple sclerosis. I recommend that you undergo a repeat brain MRI in 6 months to look for signs of multiple sclerosis."

He gave me an awesome print out of his notes ... along with an email address! He was a great doc and I feel confident with his care.

He's going to contact Mayo for the MRI they did and review it. He even said, "it's not like I'm going to find something they missed, but I'd like to take a look and see what they did exactly."

There's a certain MRI of the thoracic spinal cord that he's interested in. If they didn't do it up there, he'd like to do it here. There is a lesion that could show up in that area, that would definitely cause the symptoms I'm having.

I've also got a bladder 'thing' that I didn't really realize was an issue.

Okay, and then say they did in fact do an MRI of that particular area and it comes up clean ... there's a possibility I could have something called 'autonomic neuropathy.' There's a super strange 3 hour test that can be done, but he doesn't want to do it at this point. {oh! and no spinal tap or anything else at this point}.

He did a bunch of blood work to test for some other possible things and will let me know if he finds anything out.

So ... overall? So glad there is no MS diagnosis. Overall? Frustrated that "I'm a mystery."

I think as women {and maybe I'm only speaking for myself here}, we tend to 'put up' with our symptoms and deal with them. Always feeling a bit 'blown off' by doctors. I can't tell you how many times doctors {including ER docs} have told me, "You're stressed. You're tired. You have a new baby. You have a business. Try to get some rest." Blah!!

When talking to my neurologist at my recent appointment, I told her because I'm used to being blown off, I'm apprehensive to list off every symptom I've been having ... now and in the past, that could be relative to what I'm going through right now.

Her reply was awesome! She completely agrees and even lectures to that fact. She says men hate her lectures and women applaud her. If a man were to walk in the ER with some of the symptoms I have, or women have ... they'd immediately be hooked up to EKG's, tested, etc., etc. But we women, are told we're stressed.

I think it sucks. And it also makes me not want to admit to anything going on. Does that make sense?


Again ... I'm super, super happy things look good right now {honestly, praise God and thank you for all your prayers!!}. But just frustrated that I know I feel something going on and not being able to get to the bottom of it.

I do trust God has this in his hands, with his timing, and his diagnosis. I will 'give it to him.'

And in the meantime, I am going to get my butt moving. I am motivated to start moving. Jenny, your twitter helped me with that today! I need to 'healthy' up my life ... not to mention that triathlon will be here before I know it!!

And after all that ranting, I should reiterate, I'm very confident in the care that I'm receiving and the doctors I'm seeing. They haven't blown me off and seem very interested in getting to the bottom of everything for me.

I am blessed. {sometimes I just need to let off a little steam ...}


Sue said...

Letting off steam is a good thing and we're all here to listen. You've been through a lot and I'm glad to hear you didn't need to go through the spinal tap. I had one years ago and it was not fun.

Hang in there...you have so many praying for you!


Anonymous said...

I feel your frustration oh so very well....but at least the MS seems to be negative. Thinking about you and know that through our conversations that if we truly give it to him...we will be okay. I am banking on it!


Tiffany said...

OK, so it is not the end, but at least you are on the right path. You have doctors working on you that you are comfortable with, no MS diagnosis, no spinal tap, no 3 hour test...... let's take it! I hear you on the "if you were a man" thing! I just switched my OB/GYN to a woman and I couldn't be happier! You hate to sterotype, but it happens too often to not think that it is true on some level. Let off as much steam as you need to!

LobotoME said...

hi tracie - i'm glad that the MS thing still seems to be a scare vs. a reality...
just continue to be your own BEST health advocate - take care of your body everyday and keep pushing your doctors until you get to the bottom of it. i was mis-diagnosed over a dozen times with random diseases before a good doctor finally discovered that all of my symptoms were ovarian cancer...fortunately he discovered it in time. but doctors kept telling me it was all in my head and my abdominal pains were pms symptoms etc..come to discover my stomach pains were due to a grapefruit size tumor not me going crazy! anyway, keep advocating for yourself and keep good medical records of who you saw when and what they said and what your symptoms are day to day.
we'll keep you in our thoughts and prayers -

xo, Jenny

Anonymous said...

You may want to check into

Dysautonomia is a general term used to describe a breakdown, or failure of the autonomic nervous system. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment. These conditions are often misdiagnosed.