Wednesday, November 5, 2008

Let the frustration begin...

Urgh... I don't even know where to start. The last week has been the definition of frustration. This could get long winded, just thought I'd warn you in advance.

First, while 'physically' I am doing tons better, cognitively (my mind) is not. I've had short term memory problems on and off for about 3 months now. Fine, I can deal with that. But now, I am beginning to feel like my brain is revolting against me. The first thing I noticed was I was having a hard time finding words. Even if I found what my brain thought was the right word- it would be close but not correct. For example, I kept referring to my daughter's birthmark as a tattoo. That would be funny- if I'd had realized it after the first time. But I was completely oblivious until my husband pointed it out. I went to lunch with Wayne, and ordered blue cheese for my gyro. Not... at all...what I wanted. What I wanted was feta. It's like my brain picks it word similar in meaning or idea- but it isn't the right word and I have no idea until someone points it out. Typing has proven a whole different set of issues. Even as I type this, I am backspacing and correcting like crazy. I keep wanting to use 'red' instead of 'read'. Or 'right' instead of 'write'. Or I misspell words. Like recently I was trying spell 'tile'. I retyped it four times as 'tial', and was truly baffled that spellcheck was saying it was incorrect.

Those... believe it or not... are the easier issues to deal with. What's proving to horrible is my brain's apparent inability to focus. I used to be the queen of multitasking. I could cook dinner, do dishes, talk on the phone, and yell at Josh to leave the cat alone all at once without so much as batting an eye. Now? I can do exactly one thing, and one thing only, or I get completely overwhelmed and confused. I found out the hard way this goes for 'sounds' or conversations as well. I was at my mom's house this past Saturday for Morgan's birthday. My mom, her husband, my grandma, Josh, Morgan, Wayne, and myself were all there. Mind you, anyone who knows me knows I have a massively huge family. So by comparison to the 30+ people gatherings held on my dad's side of the family- this was really small. Yet, just this small gathering sent me into almost a panic attack. Let me try to explain this.

Normally when people are in a room with a crowd and multiple conversations going on at once, you simply look at the person to whom you are speaking the rest becomes background noise. We do this without effort, or even realizing it. I, apparently, have lost that ability. I was in the kitchen and everyone was talking at once. I was looking at my grandma trying so hard to listen to what she was saying- and I couldn't. It was like every voice in the room was amplified in my head, and I couldn't focus on just one, so none of them made any sense. After about 20 minutes of this I got completely overwhelmed and ended up bolting to the patio desperate for quiet. Wayne of course followed me, and I just broke down crying. I seem to do that a lot lately. It was just so frustrating. I was on complete sensory overload, and there was nothing I could do to fix it or make it better. It was just...awful.

I've decided insanity would be a lot better than the issues I'm having cognitively right now. Why? Because a crazy person doesn't know they are crazy. They just live merrily in ignorant bliss. I feel like a crazy person- but I know my mind isn't right. So rather than living in ignorant bliss, I live in a hell of knowing how I was, how I am supposed to be, and how I am now no matter how hard I try to change it.

So... I went to my first of many neurologist appointments today. I told Wayne last night I did not have a good feeling about this one. I actually almost canceled the appointment and just waited til my next one on the 17th, but decided to go anyway. My appointment was at 9am, yet at 10:30 am I still had yet to see the doctor. He finally comes in, and though he wasn't cold or mean, he was rushed. I felt like he wasn't truly listening to me at all. He then tells me he wants to do some tests on the electrical impulses to my limbs, my eye response speed, and a spinal tap. It was when he said spinal tap I went "whoooaaa I don't think so". He then tells me "while he's pretty sure I have multiple sclerosis, he needs to rule out brain cancer and Lyme disease". Lyme disease??? Are you kidding me??? I've never been bit by a tic in my life, hell I haven't even been in a place they are in probably 5 years. And brain cancer? For one, I highly doubt brain cancer would be remitting on it's own untreated as my symptoms do. Secondly, the MRI results very clearly stated "no tumors or growths". What did the MRI say? It mentioned lesions and demyliation (which means deterioration of the mylein sheath) many times. It even mentioned Multiple Sclerosis many times. The very last line of the MRI report was underlined in pen by the doctor that read it, and it said "Results are indicative of the demylitative disease, Multiple Sclerosis"

My primary care doctor say the report, took into account I have about every symptom of MS possible for diagnosis, and said I had Multiple Sclerosis. Now this guy is saying to me he "thinks" that's what it is but wants to rule out things I have NO symptoms of, or even MRI results to suppot. Keep in mind, as I was telling this neurologist about all my cognitive issues (in tears no less), he was very gently nodding and reassuring me they are all very much to be expected "with brain lesions indicating MS as you have". But then turns around and wants to do a spinal tap? I have done my homework. A spinal tap does not positively identify MS. In fact, nothing does or can, it's a matter of having enough symptoms and results that match the factors of it. All a spinal tap will tell you is if there is an excess of protein in the spinal fluid associated with MS. So isn't the fact I am like a text book of MS symptoms enough? Or the MRI doctor specifically saying the lesions are indicative of MS? It was for my primary doctor- why not him?

THEN... he makes the appointments for the electrical impulse and eye speed test. SIX WEEKS FROM NOW! AND tells me he'll see me TWO WEEKS AFTER THE SPINAL TAP!!! This guy wants me to wait a minimum of 8 freak'n more weeks??? Are you kidding me??? I can not go another 2 months untreated. I need to be on medication NOW. This just blows my mind. How can this man think this is even remotely acceptable? I am in hell, and he wants to put me back into limbo just so I can sit and get even worse in the meantime????

So yeah... I am so frustrated and angry right now I can't see straight. (no pun intended on the wonky eyesight, lol) Wayne is livid as well. We both agree to go to the next doctor on the 17th. If she also wants a spinal tap- fine I'll go through with it. But, it will be via her office, not this guy's office today. I just don't trust this guy, and with something as serious as Multiple Sclerosis, I can not be under the care of a man that doesn't listen and thinks making me wait extra months untreated is somehow ok.

That is where I am at... it's not a good place, but where I am regardless. *sighs*

I'll update more after I talk to my primary doctor about what happened today.

Take care all :

1 comment:

  1. Hi I'm Mary, Melissa's mom. In order to fully understand this last blog, you have to understand that Melissa is one of the best spellers, has an incredible vocabulary, and tested out of college English classes....she's extremely smart. She’s fast witted, NEVER at a loss for words or a quick comeback and has the ability to put someone in their place quick, fast, and in a hurry…believe me, I know this for a first hand…lol. For her mind to be doing this is absolutely her living hell. She’d cope easier with physical issues than with this.

    I love you Melissa, hang in there. You have a huge family pulling for you and praying for you. We’ll do whatever it takes to help you regain some quality of life. Don’t give up because I’m certainly not going to.