Monday was very stressful, for me and half of the country. There were storms and tornado scares. The only reason I’m mentioning is because the resulting relapse from the adrenaline surge of just barely avoiding having to run for safety has sent my body reeling. I began paying the price for it yesterday… But, at least there is still a house to pay the price in; some of the surrounding homes weren’t so lucky.
After my neurologist’s appointment, I was sicker than sicker than sick. The dizziness has been incredible. My right eye began twitching and I got a massive headache that persisted even after vicodin and ibuprofen. It’s been with me today as well, which must be something of significance because I can’t remember the last time my eye twitched.
But my new neurologist is simply fabulous.
- He listened to what I had to say.
- He asked questions to better understand what I was getting at.
- He did a full neurological exam (which I’ve NEVER had before, if you can believe it).
- He didn’t tell me I was crazy or just over-reacting.
- He didn’t scoff when I told him about acquiring Myalgic Encephalomyelitis and Lyme disease.
- He was actually HELPFUL and offered me HELPFUL tests and rehabilitation.
And most importantly, he was able to take the time to explain to both my mother and myself what was probably going on. He didn’t get exhausted with me, and he’s going to be my primary neurologist! I see him again in four months. :)
I feel so great about going…even though I didn’t want to. I just figured, if three different doctors told me to see him, I should probably just take the “hint” and go. He said he gets a lot of the complicated cases, and surprisingly (or maybe not-so-surprisingly) a lot of his complicated cases get better on antibiotics than they do on steroids. Hmmm…!
As for what he found:
He says I have some neuropathy in my limbs, and the reflexes in my legs were blunted. He was actually able to stand in front of me while doing the knee jerk reflex test. He also talked about cranial neuropathies, and said he can see the remnants of the Bell’s palsy in my face. He says he’s not sure if it will go away or not, but if I get out of this mess with “only” a crooked smile, I think that’d be fine with me.
And I didn’t prompt him at all, I swear, but I ultimately asked him, what about the numbness episodes that are associated with my digestion? And he started talking about the vagus nerve and autonomic dysfunction. Insert me having to hold back my shock, here.
He explained how the vagus nerve controls the things like heart rate and blood pressure and the digestive process, and.. all the other random things I’ve already mentioned here. And guess what, people. The vagus nerve is what initiates the swallowing reflex…! And he thinks other cranial nerves are involved in this (my face and tongue going numb) because of my initial presentation with Bell’s palsy, signifying the infections are obviously attacking there…
So, basically? I have autonomic neuropathy. Everything that I thought was happening? It’s actually happening. The cause of these “episodes” I’ve been having really is a form of dysautonomia. The doxycycline really did initiate my the vagus nerve issues just like it did the first time, pushing me into that incredible herx where I couldn’t eat and couldn’t swallow and had a nervous system meltdown from it trying to kill the bacteria that have thoroughly engrossed themselves in my nerves… It’s really clear why everything else–my migraine triggers, response to caffeine–is just so hypersensitive right now. He likened my nervous system to that of an infant’s, learning to regrow and rewire itself in the appropriate ways… I just hope it doesn’t miswire.
He wanted me to have spinal tap done to see if the Lyme would show up. I told him how it doesn’t show up, and in fact is even less likely to show up there than in the blood, but he seemed to think it “should” show up anyway, and also wanted to see how much nervous system inflammation there was… But honestly, I don’t see a point in doing this invasive procedure, when it has only a 13% chance of showing Lyme disease, and my insurance can use that against me to deny me my medication. So, no lumbar puncture.
My B12 levels are fine–they tested me in the hospital. *sigh* I sort of wish they’d have been off, because then I could do something to help my body! But he’s testing me for a B1 deficiency because he said sometimes it can cause the same type of lesion on my brain. Ah, and about that: He said that at least it’s a stable lesion (i.e., not changing) and though he could easily blame my new problems on it, he doesn’t think it’s to blame because it’s been there since at least 2009.
In the end, he said to continue on my antibiotics because they were helping me, though he did hope I would’t have to be on them indefinitely. He’s giving me a referral for neuropsychiatric testing to better understand what type of cognitive dysfunction I’m having. He didn’t want to do it in office because I seemed so alert, and basic testing (“remember these three items in the correct order…”) wouldn’t have shown anything. Also, he wants me to try memory training to see if it will help… I’m not sure how that will work with having M.E., but I figure it can’t hurt? I mean, unless it does hurt me somehow, then I’ll stop going, but it might be good to make sure my brain follows the right path in its healing. (It’s ironic, though, because as my treatment progresses, my cognition will improve anyway, ha.)
Tomorrow I see my cardiologist again to get this holter moniter off of me, and we’ll see when I’m to go to the rehabilitation clinic to analyze how my brain is functioning.
And there you have it!
♥ a rainbow at night