Yesterday I called my GP for an appointment for pain medications. It’s my usual monthly appointment. He was booked solid, so they fit me in because I’m a frequent flyer and several of the doctors down there won’t prescribe my narcotics. They all refer me back to my usual GP. He is the owner of the practice, and the other doctors just don’t want the headache of narcotics. As an aside, he put me on notice that he would not be prescribing these drugs forever. And that I need to taper off. That isn’t really going to work for me. But that’s another post.
They fit me in at 9:20am. I knew they were doing me a big favour, and I was very grateful.
Then somewhere along the line my brain changed the appointment time to 9:40am. They called me at 9:30 to ask me where I was. I got in the car and got down there fast. He fit me in at 10am.
By then I was pretty upset emotionally. This happens often now.
I get appointment times wrong. I show up on the wrong day at the wrong time. Or I’m late because I got lost and couldn’t find the rooms. Even though I’ve been there before. I need my GPS to find my way to places I’ve been to many times before. I can’t remember where my doctor’s rooms are, even though I’ve been there several times. I have episodes where I completely blank out. Don’t know what I’m doing or why I’m there.
Of course I write these things down. I checked my appointment time this morning. I still read it as 9:40am. But it was 9:20am and it was in my calendar as 9:20am. I just don’t read it correctly. And then I find I’m completely wrong and I’ve inconvenienced everyone. And I feel terrible. And a little scared.
I recently messed up my neurosurgeon appointment. That was very upsetting and disturbing. I was very much looking forward to that appointment. No way would I screw it up on purpose. I showed up half an hour late. I was convinced it was for 2:30pm, but it was actually 2pm. Again, I had it written down right, but I read it wrong. And I was sure.
I also messed up my last rheumatologist appointment. She was running so late it didn’t matter at all. Lucky.
I often get confused. I forget what I’m doing. Walk into a room and forget why I went there. I go to a shop and forget what I was buying. I know everyone does this. But this is different. It happens a lot and it has been happening more and more. It’s scary now.
I have episodes where I can’t read written words. I can read each individual letter, but I can’t read the whole word. Though I know what each individual letter is, I can’t comprehend the word. It has no meaning. I rest and it goes away. Until next time.
I transpose numbers. I dial the wrong number, with some of the numbers transposed. Numbers I’ve been dialing for years. I mean often. I know everyone does these things sometimes. I am doing these things often.
I use the wrong words when I’m talking. One that sounds similar but means something completely different. The kids tease me about it. I was trying to say ‘infant’ last night and I said ‘impact’. I don’t notice I’ve said the wrong word right away, but then the kids laugh then I realise I said the wrong word. Again. Other times I just struggle to find the right word, and wind up describing it instead; ‘You know, the thing with the long handle that you use to clean floors…’. It happens often enough so that my kids call me on it it and think it’s very funny. It might seem funny to you.
I’m not finding it funny. All of these things, added up, are making me think there is something very wrong with my brain.
I sign excursion forms and fill out the details, then I have no idea I did it. The kids talk about where they are going, and I say I don’t know anything about that! Then they show me the note. With my signature on it. My signature.
I keep losing paperwork and having to have people send it again. I have little piles of stuff everywhere. I go through the pile and I can’t think where things belong. Medical records I need to file. Referrals I need to keep and bring with me to appointments. Bills I need to pay. So many bills I’ve paid late. I just forgot. None of this is like me. I used to be hyper organized. Now I have stuff everywhere, and the house is always a mess, and I can’t find anything.
I have daily dizzy spells. Some days I have sporadic vertigo attacks. Some days I am dizzy all day, and can’t do anything. The room just spins and I have to lie down or fall down.
I have a constant headache. Some days its mild, like today, but it’s always there. And I’m so tired. Sometimes I just have to lie down and fall asleep almost instantly. (That could be RA fatigue).
I have started getting migraines. They are averaging one every two weeks now. I know that’s not often compared to most migraine sufferers, but migraines are new for me. I used to get one or two a year. And they weren’t severe. Now they usually force me into a darkened room for the day.
I have blurred vision, mostly my right eye. But sometimes my left joins in. And a searing pain in my right temple some days. Then it goes.
I have balance problems. My vestibular testing all came back normal, with a recommendation to have a neurologist review the documentation. That means my balance and dizziness are not inner ear problems, so they can only be a problem in my brain. I have no idea where those test results are either.
I have hearing loss in my left ear, along with tinnitus. My ENT didn’t even examine me and declared it to be otosclerosis on the basis of the audiogram alone. I don’t agree with him. But he’s a lazy doctor. At least I will get my hearing aid.
My last MRI showed some early demyelination (a potential sign of MS, though it wasn’t in a typical MS location) and chronic small vessel disease.
But the degree of damage didn’t explain my symptoms. So I was reassured. But I’m feeling pretty symptomatic now. There is no one person on this planet who spends enough time with me to confirm nor deny my perceptions. I spend most of my time alone.
Clearly I have been very emotional lately, swinging from depression to anxiety and irrational fear. Maybe that’s a symptom too.
My cardiologist reviewed my MRIs and told me I was at major risk factor for early onset vascular dementia. Vascular dementia is caused my multiple, tiny strokes, silent strokes or mini strokes (trans ischemic attacks) where the symptoms of stroke are temporary. My MRI shows multiple tiny strokes, and they cause the small vessel disease. In and of themselves these strokes only do minute damage, and aren’t even noticeable when they happen. But over time, the damage adds up, and symptoms of vascular dementia begin.
There is no cure, and no reversing the damage. Prevention is keeping blood pressure low, and this is why my cardiologist put me on blood pressure lowering medication. He was openly annoyed that my neurologist hadn’t started me on BP medication sooner, only prescribing blood thinning medication. He explained my MRI findings (my neurologist did not), and explained the causes of the disease so that I would understand the seriousness, and stop my NSAIDs and prednisone, as these contribute to high blood pressure and high blood pressure is the cause of the tiny strokes. He warned me to watch out for headaches and other signs of vasculitis, as he suspected I may have cerebral vasculitis, but my high steroid use has been masking it. He is waiting and seeing.
The lower I go on prednisone, the worse the symptoms are becoming. It feels like everything my cardiologist warned me about is happening. I am over emotional and very worried. I’ll be seeing my cardiologist in early August and my BP is still too high. Chronic small vessel disease of the brain goes hand in hand with chronic small vessel disease of the heart. If you have one, you pretty much always have the other. He seems to be the only doctor I have who is really understanding the complexity of my health and is actually trying to do something about it. He told me bluntly that if my blood pressure remains in the 160s that I am a heart attack or a major stroke waiting to happen.
I just read this back and when I’m writing I often repeat words. I write them down twice in a row. Or write the wrong word, just as when I’m speaking. I’ve noticed this for a while, but it is really freaking me out now. I’m worried.
There is nothing more upsetting to me, or frightening, than losing my ability to think, to remember, to take care of myself. As it is now, I feel like I need someone to double check my appointments. Make sure I’ll get there on time. Because my iPhone isn’t doing it. I feel like I need to be babied, looked after, minded…because I’m not capable of managing life on my own. I keep screwing it up, when I used to be so very capable. It is the worst feeling.
I’m afraid I’m going to need a lot of help, and I don’t know how that’s going to work.
All of this stuff is not caused by pain. It’s not caused by my pain medications. This is not brain fog or simple forgetfulness. There is something going on in my brain and it better be reversible.
My GP is worried, I can tell when he is. He’s sending me for another MRI and wrote me a new referral to a new neurologist (I lost the one he gave me last week, surgery nerves, right) and included the memory loss and confusion issues and wrote a great big URGENT on there.
He got me an appointment the week after next.