This was going to be merely in reply to Jeanne’s comment on my post titled, Sleep. But, since I wasn’t sure if I had hashed out how I had gotten here in neuro land on this blog before, I would just post it for everyone.
Thanks, Jeanne. My Neuro is actually great in the regards that he’s really trying to find something that will work. And he calls – he – after tests to give me results. And most of the time he will call me when there’s a med adjustment, too. When I was in the ED 3 years ago, they had 4 neuro’s and 2 neuro interns examining me and a team resembling the team from House. I was literally crying because I told my husband “If they have the House team here, I’ll be near death before they figure out what’s wrong.” Their ruling was either MS or severe spinal stenosis but they couldn’t keep me because the scan of my bladder ruled out stenosis. Then when they tried to do an MRI to see if it was MS I went ape even though I said I wasn’t claustrophobic! I’d had MRI’s before with no problem! But this time I went into a full blown panic attack even with valium, and they said they wouldn’t do and had to send me out for an open MRI. So they consulted they chief Neuro, my neuro, and he said for me to come to him Monday (this was Friday night when I was at ED) and he did an open MRI to “confirm MS.” Problem was my brain MRI was clean. Then they did EMG studies and tons of other tests to look for MS, because he was certain that’s what it was, but it only showed mild strength loss not much – and mainly in my arms and hands. He said he had a hunch but wanted to rule out rheumatology so sent me there. They did a bunch of blood and said no RH or lime, it was neurological. Got sent back to neuro. At this point I was walking funny because my leg was wobbly and I had strange head pressure. Then they did a series of cat scans – one when my head didn’t feel wobbly and one when it did. And he determined that I indeed was having complicated basilar artery migraines. He told me it was rare and a complication from carrying and traumatically delivering my daughter – delivering her literally shocked my system (i.e. resulting in claustrophobia, diabetes insipidus and autoimmune thyroid disease because of a destroyed posterior pituitary gland).
We then tried two different meds that didn’t work and then in December of ’05 my neuro gave me Topamax. And Topamax and I then had a 16 month love affair that resulted in hardly any migraines. Strangely enough, even though I didn’t have migraines I still had episodes of transient numbness or weakness that never lasted long. We just attributed it to the migraines. Now recently, I come in with my trigeminal neuralgia and he says it’s from an ear infection that’s not cleared up. OK – I’m going along with this only because I did have a sinus and ear infection that raged out of control because of my main doctor’s incompetence. The reason we are having med problems right now is because of A) the trigeminal neuralgia and B) my sodium problem with the neuro meds and the DDVAP. I have to take the DDVAP, but because it messes with sodium – and I was on two other meds that messed with sodium (Topamax and Tegretol), my sodium fell dangerously low. So they took me off the Tegretol and put me on the Baclofen when the Tegretol was no longer helping me instead of increasing so I could actually, possible, increase my DDVAP to twice a day again soon (let’s cross fingers people!). My neuro is really trying to work with my endocrinologist who is the dragging his feet. This guy is never in his office, takes a week at least to call me back, never call me back personally, and I haven’t actually seen him since this summer! I’m not complaining, though, I don’t want to go see him.
Overall, besides transient numbness, I now have trigeminal neuralgia, the right side of my face now feels permanently tight (imagine a facial mask left to harden and then not washed off ALL DAY), vertigo (not all the time – comes in episodes), tinnitus (episodic), and now the fun smelling smoke. BTW – I finished my second round of antibiotics for sinus infection yesterday. I haven’t felt sinus pressure weeks. So why the smoke smell? I’ve noticed it is worse in stressful situations.