Speaking of multiple sclerosis, I was reminded of this yesterday.
The day I was diagnosed, my neurologist’s office called me and asked if I could be in for a lumbar puncture in fifteen minutes. I could not, because I live an hour away. But I was there by noon.
My neurologist came in to talk to me when I was already set up for the LP, and he started the conversation by drawing a small cartoon of a brain. I knew that MS was an possibility, so I was holding my breath. But there was also a part of me thinking, “It’s weird that he’s drawing this picture on the table where I’m sitting wearing brown socks, long underwear, and a hospital gown. I wish I was wearing clothes for this.”
Then he drew some little spots on the brain, and those indicated the lesions that he’d seen on my MRI results. My brain went completely blank for a minute. I only remember thinking that I should be asking questions, but I couldn’t come up with any.
The doctor seemed uncomfortable delivering the news. So as we were sitting there (me in my brown socks on the table), he kept doodling those little spots, but now they weren’t in the brain drawing anymore. They were sort of loosely floating around the brain. And again, a part of me was overwhelmed by what I was finding out. But the inappropriately detached part was thinking, “He’s making it look like a bunch of lesions are chasing my brain around. Or like I’m trailed by a cloud of MS wherever I go. That’s way worse.”
Two minutes later, I was on my side, hugging my knees, with a needle in my back, and that was that. The whole conversation, including somewhat creepy illustrations, lasted under five minutes. He meant well, but I haven’t continued to see that neurologist. I do wonder if his drawing is in my chart somewhere.
At any rate, that was the start of things.
To Christina, who commented yesterday: good luck. Take it step by step — the good, the bad and the weird — and know that whatever happens, it doesn’t change who you are.
I didn’t have a Lumbar Puncture. I don’t have insurance. Once I found some help for coverage, I had blood tests, saw multiple Dr.s, got a neurologist, touched my nose numerous times, walked while watched, had multiple MRIs, an eye test, and that’s what I remember quickly at the moment. I told my Dr. (neurologist) I thought I had PPMS, he said I had secondary progressive relapse remitting MS. Then he told me he guessed we had nothing else to talk about. I’m really not that bad of a dude. (I think his attitude changed when I told him I was an attorney.) I talk to his nurse practitioner now, who tells me he has a bad bedside manner, and she thinks I have PPMS too. Only after my insistence did he show my dad and I the spots on my brain and spine. Now, I continue my MS journey and it is what it is, as my friend from law school says. Love this webpage… (or whatever the heck it is.)
Johan, the lumber puncture sucks, and as I understand it, the MRI is the more sensitive test anyway. For what it’s worth I’ve been diagnosed with RRMS, PPMS and PRMS. Seems like not everyone fits accurately into one of theses boxes, doesn’t it?
I am finding the world of MS to be what I like to call nebulous.
Hi! I just wanted to let you know you are not alone. What I mean is I had a very similar situation when I was diagnosed. My lumbar puncture was perhaps the worst pain I have ever felt and I have a high tolerance for pain. It took too long and I lay there crying. It was over and we talked about the MRI pictures and the lesions. He told me it was RRMS and he was very awkward about it. I understand it isn’t something you want to tell a patient but I had figured it out already. I was not shocked. I had questions. I was ready to start moving ahead with treatments. Instead of talking he handed me a nice box set of booklets about ms and treatment. He told me to read them and gave me some time to myself to collect my thoughts. He dimmed the lights and walked out. So I laid there and laughed. I thought it was a weird emotional reaction but that is what I felt like doing. My doctor had a horrible bedside manner so I switched to a group of wonderful doctors here in NC. 2 and a half years later I am doing great. I am learning something new everyday about myself and ms. I am in a very good place emotionally. I am sorry about how you were told and say I understand. I am glad I found your blog. Stay strong.