Hi,
Here's the latest info.........
I had a follow up MRI (NO contrast) yesterday. I've been having problems with really bad dizzy spells, which I think is partly due to the amitryptiline. I'm up to 80mg at night, and ever since I hit the 70mg mark, I've been having the dizzy spells, getting puffy eyes and hands in the morning, difficulty peeing, dry mouth, really wacko and bizarre dreams, and more fatigue. Anyways, the MRI itself went ok. I was really dizzy afterwards, but I've been having probs laying flat since it causes a flare up in the headaches and increases the dizziness when I get up (probably orthostatic hypotension, which can be a side effect of amyitryptiline). They gave me copies of the scan before I left so I could take the films to the neuro appointment on Monday (22nd). I had a neurosurgeon give me a 2nd opinion of my last set of MRI's from July of this year. Lucky for me he marked where the 2mm lesion was. He wanted me to have a follow up MRI (6 months from the July date, which was the scan yesterday) and he also felt that it WAS a lesion in the midbrain, but nothing really could be done at this point since it was still so small...basically just wait and watch). Anyways, he marked on the July scans where the lesion was, which was great, so I could actually see what I was looking for on the new scans. I pulled out all the old MRI's from the past 2 years and looked in the "midbrain" area for the "lesion". I looked them over a few times and could NOT see ANYTHING in the midbrain, except for the July scan and also the one from yesterday. So, basically the lesion "developed" sometime between June 2002 and July 2003. It looks about the same size now as it was in July. I'm not sure how they actually "measure" the sizes, so I'm basically going on looks. So, I'll be bringing the old and new MRI's with me to the neuro appointment on Monday to show the neuro and see if I can convince her to put a diagnosis to it...even just a cheesy one for the time being. Just enough to get me disability for the time being. Part of me is glad that the "spot" is still there, which basically is proof that there is a lesion, and it wasn't artifact. The problem is that I have to play the "watch and wait" game trying to deal with the symptoms as they come. BUT...I was glad to see that it wasn't on the old scans...that at least gives me some evidence to show the neuro that there IS a problem that does need to watched. I still have the headaches despite the amitryptiline, the magnesium and riboflavin supplements, and avoiding ALL the headache dietary triggers. I have been having "shocks" which I think are from the amitryptiline, since I get them about 2 hours after taking the med. The "shocks" feel like electrical current getting zapped down my right leg at first, and then my left leg and then my arms. They last for about 15-30 minutes, and are sort of uncomfortable and painful. I did have an episode over thanksgiving which lasted 4 days, but I've also had about 7 days of some speech probs and occasional twitches. The neuro probs are still there unfortunately, which I hoped they would be able to do something about, but I guess I just need to deal with one thing at a time. My first priority is to try and convince the neurologist to put a "label" on the lesion so I can get disability. I've been terminated from work, and can't go back due to the lights issue. My COBRA insurance ends as of the end of May, so I need to get something before that runs out. I have no money coming in, so that makes paying premiums a little hard. So, keep you fingers crossed that I can convince the DR about giving me a diagnosis for the lesion, since I have "proof" that it wasn't there in June 2002, but "popped" up in July 2003 and is still there now. Hopefully she'll also want to do 6 months or 1 year MRI's just to keep an eye on it too while we are trying to take of all the other loose ends caused by this "little stinker" up in the midbrain. Keep your fingers crossed! I'll keep you posted!!
Kathy
