Multiple Sclerosis

I've been asked to keep people updated on my health.

So far, here's what I know.

The spinal tap came back negative for MS. Apparently, 5% of all MS patients have negative taps. My neurologist's LPN doesn't want to diagnose with a negative tap. She wants me to wait a few more months and come back after the symptoms are a little more pronounced. I'm not a doctor and I don't play one on TV. However, I think this is an unacceptable answer.

This is where I think it's important to listen to your body. I'm 28 years old! I'm too young to be old and crippled. I know there is something not right. I just know there is. Too bad many in the medical field won't accept "I just know" as a symptom.

I understand that doctors have to be skeptical of patients that come into their office. Anybody that has been in the Army can tell you that only the weak minded get sick. I still have the mentality that if you go to the doctor, you must be trying to get out of work. That's awful and inaccurate, of course. But that's how I look at things and I believe that's how doctors look at patients.

Even if I were faking my symptoms (and I'm not), how could I fake the lesions on my brain? If the spinal tap came back negative for MS, shouldn't we be proactively trying to figure out what is causing the lesions, why my right leg feels like it's on fire, my right arm has electrical pulses shooting through it and my right eye is twitching uncontrollably? I'd like to have answers and telling me to wait until the symptoms get worse isn't the answer I want.

I'd be a little more placated if she told me that they were researching what other possibilities are. But, as it is, we are just sitting here doing nothing. We aren't making any progress in diagnoses or in treatment. I'm sitting stagnant, waiting for someone else to take the initiative to find an answer. And if I don't stand up for my health, who's going to?

Here's the thing. I don't want MS. I don't know anybody who has MS that says they asked for it. I am shocked at how many people have said that if I didn't go to the doctor, I would be fine. They are surprised to hear that I am pushing for a diagnosis, asking why I want to be told that I have MS. What I want is an answer. I would like to know why my head is fuzzy, why I lose simple words, why do I get dizzy and how come my face alternates between tingles, numbness and pain.

I sent copies of my medical records to the neurology department at the University of Utah for a second opinion. I have an appointment in two weeks and I have never been so excited to see a doctor! I will be sure to post what they say.

On a side note:

I had to collect my medical records to submit to the U of U. I started with the initial visit to the ER. My husband and I had gone to the movies, where we had a large soda and popcorn. After I got home, I passed out...sort of.

I could hear what he was saying, but I couldn't respond. I wanted to get off of the floor, but I couldn't. I couldn't count to 10 without difficulty and my limbs were suddenly heavy.

After CAT scans, EKGs, urinalysis, and blood work I was sent home. (If they had ordered an MRI, I wouldn't have spent the next year being misdiagnosed with Meneire's.) I couldn't sit up on my own without Jaysen helping me and I spent the next five days laying flat on the couch. I couldn't walk across the floor unassisted. I had to crawl across the floor to get to the bathroom. It was as though I had spent the morning shooting tequila and eating the worm.

Imagine my shock when I read that "the patient reports feeling alot better" on my medical records from that visit. How can they say that when I didn't feel better at all?