I have to get better at keeping the blog up to date. I have been lazy and writing on facebook, but not documenting things here on the blog. It’s a great record of my health and it helps me remember what happened when. Cos, you know, brain fog!
I was supposed to see him several weeks ago for a follow up. I had a Holter monitor test and some bloodwork done. But I was in megaflare the day before I was supposed to see him, so I postponed that appointment. Then it was school holidays, so it turned out to be nearly eight weeks between visits.
He barely remembered me. Fair enough, but how about, you know, you READ my file before I walk in?
He reviewed my brain MRI again and had an ‘a-ha’ moment. Then he read (aloud) his file notes form last time. He wasn’t actually *talking* to me. Kinda just talking at me. Or at the air, and my presence was incidental. So I interrupted and added in bits and pieces as he ran through the list.
Swallowing problems – getting progressively worse (at the time). I told him I wasn’t eating solid food at all. And sometimes even swallowing water was impossible and felt like swallowing a golf ball.
He said that wasn’t neurological. Um, what? My rheumy saw it as a neurological red flag and it was a big part of why she organised an urgent consult with him. But I didn’t argue. I’m an experienced patient. Doctors like this one do NOT like to be argued with.
Balance issues, still there, but sporadic.
Numbness in my limbs, still happening. Still getting a lot of painful pins and needles.
Dizziness and nausea. So common it’s just a normal part of life for me.
Bladder problems. Sporadic. Coincides with sciatic pain, though. And my lumbar spine MRI shows nerve impingement, which does explain that.
Right eye blurred vision – much improved. Can’t remember that last time it happened. Many weeks.
He responded that my Holter monitor was normal. I said that seemed unlikely because I remember the day I was wearing it. I had several episodes of tachycardia. I checked my pulse with my various toys, plus I could feel my heart pounding in my chest. I asked for a copy. He ignored me. I remember the night, because we went to a fireworks display. That night, in bed, my heart rate was well over 110bpm, for over an hour. Lying prone in bed. That is NOT normal. But he says it’s normal. Good for him. So glad I bothered with that test.
Then he said he doesn’t believe I have Multople Sclerosis (MS). Great I say. That’s a relief I say.
He says he’s sending me for a follow up MRI to look for progression (in case). And he’s doing an MRA (Magnetic Resonance Angiogram) to look specifically at the veins in my brain. He believes I have cerebral vasculitis.
That sounded better than MS to me. Having since had a quick google, that’s really NOT a good thing.
Vasculitis is inflammation of the blood vessels. It can occur anywhere in the body. When it occurs in the brain, it can cause symptoms that mimic MS. However, as a disease, it’s pretty nasty in its own right. It is associated with significant mortality in RA patients.
That means I’m much more likely to drop dead if I have cerebral vasculitis. Oh goody!
Vasculitis is more common in people with serious autoimmune diseases. And it’s one of the more serious comorbidities. It’s more common with Lupus, which I have been diagnosed with and undiagnosed with so many times I’m not sure what the count is right now. Last I knew my ANA had skyrocked when I was on Humira. So it could well have been Humira induced Lupus. Rare, but not unheard of.
Regular readers of this blog will chuckle, as you know I ALWAYS get the rare side effects.
The major risk with Cerebral or Central Nervous System Vasculitis is stroke. My neurologist believes the lesions on my brain MRI are small strokes. And I am at high risk of more strokes. He prescribed aspirin as a blood thinner, but if I have CNS Vasculitis, he will need to treat much more aggressively.
He didn’t say much more. He doesn’t like to talk. He said not to worry until after the MRA and MRI scans. Good advice. I’m not a worrier anymore. I usually give myself 24 hours to worry and get upset about a potential new, serious diagnosis. Then I put it out of my mind.
But he’s not SURE yet. So I worried a bit, then I forgot about it, to tell the truth. I have so many other, more tangible symptoms going on, that affect my day to day life more, it’s easy to push it aside. I’m still wanting to stay in my happy place and not really think about medical things. Hard to achieve. But such fun!
The constant headache is a reminder though. It’s always there. It’s not always intense. In fact it’s more often low grade and nagging lately. But when it intensifies, I wonder what’s going on in my head. And I relax!
Reading down the symptom list, vasculitis does make sense.
I have booked the MRI/MRA. It’s in two weeks. Hopefully that will give me answers. Vasculitis can be mild, or it can be life threatening. Or it could be anywhere in between. As with all things autoimmune, it’s a spectrum, and I could be anywhere on it, from mild to severe.
He also said he would do a nerve conduction test next time. Why he didn’t do it then and there I have no idea. Still, he’s the expert, right? I’m forced to trust him. So I’ll have the scans and book another appointment and go from there.
Wait and see…as usual.