Tuesday, March 29, 2011


I promised a while back that when I was comfortable with my diagnosis that I would post more info here. So here goes.

A little over a month ago, I finally figured out why I was having the issues that I was having. While I was very happy to hear that it was not MS, the answer to me was almost more scary. First of all, let me say that in the process of all this I had to switch neurologists. I felt that my previous doctor was discounting most of my symptoms and my physician's referral due to my mom's MS. I did not self-refer to the neuro thinking I had MS. I honestly thought I was still suffering from the lingering effects of the heat exhaustion I experienced during the mission trip or something else like Chronic Fatigue. Lab test after lab test, needle after needle, explaining the symptoms, the constant companion of the fatigue and dizziness and waking up tired.

The doctor wanted me to try Ambien. I waited until a time we were out of town and I didn't really have anywhere to be in the morning, which coincided with a trip to Ohio to pick up Mae-Lei after a week with my in-laws during track-out. We had a couple days and with other people there, I was able to rely on them to help me out in the morning if she woke up before I did. She definitely woke up before I did. I was sleeping until 10 am on half a tablet of Ambien. Yikes!!! That's a bit much. I was now feeling rested in the morning, but still needed a nap by mid-afternoon. That meant I still wasn't getting the right kind of sleep, even with the ambien.

So, when nothing else was working, my doctor wanted me to see the neurologist to go down the MS path. Not really the words I wanted to hear. His words were, "I believe you have early MS, it's not a definitive diagnosis, but it's the best I have at this point." I called the neurologist that I had seen for my migraines and set up an appointment. Of course, the wait to be seen, even by the PA is a month or more. I get to the day of the appointment with the PA and finally get called back and am greeted by the PA and asked what brings me in. Mind you, I am not even in a room at this point, we are walking back to a room. I explain to her that my Dr. referred me to be seen for possible early MS. As we enter the room, her attitude surfaces, and I hear the words, "first of all, let me tell you, you don't have MS." GREAT!!! Now, do the right things and figure out what is wrong with me.

She then goes on to explain that she understands that I am overly sensitive to the symptoms because of mom's MS and that just because mom has MS and I have overlapping symptoms, it doesn't mean I have MS. Once again, GREAT!!! Just figure out what is wrong!! She is pretty much blowing me off and disregarding everything I am telling her, like it is MS or nothing. No other possible neuroligical condition is possible. She sends me for even more labs for vitamin d deficiency and thyroid. If not better in 6 months, she'll see me again.

At this point, I am beyond royally pissed. She's essentially called me a hypochondriac, looking for a diagnosis that just isn't there. She ignored my doctor's referral and sent me back. After speaking with him, we decided to do just that... bide our time, manage symptoms and wait it out. During that time, I came to the conclusion that I would change docs. Either within the practice or whole new practice. I finally decided to see another doctor that was highly recommended within the practice and scheduled to see him at the end of January.

When I met with him, it was such a polar opposite to my previous experience. He actually talked to me, sat and listened to what I was experiencing and realized that I wasn't making this stuff up and that I was truly scared. We scheduled an MRI and an EEG and had both completed in fairly short order. I heard back within 24 hours that my MRI was completely normally, which essentially ruled out MS officially. YAY!!! But now what.. What is going?? EEG was 10 days later and I had to be sleep deprived which meant a late night and an early morning, no caffeine or anything else that could keep me awake. I went in, did all the fun parts of the EEG, then went home and went to bed. They advised that it would take about 10 days to 2 weeks to get the results and I was okay with that and scheduled my followup for 3 weeks later. I never received a call back on my MRI results. I should have known then.

The day of my followup comes and I get there of course early as usual. I discuss the continued issues and ask about the results of the EEG as I hadn't received a call on that and he didn't have a copy of them in my chart. He stepped out of the room, made a call and came back a few minutes later. When he came back in, he said that while there was nothing "major" on the EEG, there appeared to be some "minor" activity that was a little concerning. He then asked if I had ever had seizures previously. I was like... "HUH???" I have never had seizures before in my life.

He then goes on to tell me that person who have migraines have a higher incidence of seizures. Evidently, I have begun having seizures at some point in the last 18 months to 2 yrs. I am now back on the same medication that I was on previously for my migraines when I was having major migraine issues a number of years ago. It is interesting to say the least. The good news is that my seizures are not the typical tonic/clonic seizures, but what are called a focal or partial seizure. That is what has made it harder to diagnose. I am awake, aware and conscious the whole time. I get light-headed or dizzy, muscle weakness or a tingly hand, but nothing like the seizures you see on tv or in movies.

Now for the fun part. I am still allowed to cycle, run, swim, drive and do everything else I enjoy. I debated a long time about posting this and letting people know what has been going on. But I realized that I post for me, but there may be someone out there who is going through what I have been going through and questioning if they can keep doing what they love. I am cycling as strong as I was two years ago. I am running and swimming. I am climbing hills and riding strong.

I never knew when I started this blog or titled it what I did how prophetic the title would be. You truly never know until you try. I keep trying and I keep finding out how strong I am and how much stronger I can be. So, no matter what challenges life throws at you, just keep trying.

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