progress? Fuck if I know. #lupus

I have a massive headache right now. I’ve dealt with these headaches for so long that I’ve figured out how to still mostly function while having one. None of my medicines touch it. Ever. When I feel one coming on I know I’m fucked for at least 12 hours straight, usually more like 16. Then, I might get a break for 8ish hours, then I get another one. This goes on for about 3-5 days. I’ve been meaning to write lately, because some things have gone on, so here is the short-and-sweet version.

The local neurologist that ran my EMG/nerve conduction, sleep apnea study, skin-nerve biopsy, and test for Sjogren’s said everything is normal. Womp womp. Might seem weird, but I hate it when tests come back normal. I wanna know what the fuck is wrong with me.

I had this month’s Benlysta. Usual shit. Although, strangely enough when I got home I suddenly felt pain-free. Didn’t last more than a few hours. It made me cry, though. I haven’t been completely pain-free in a long, long time. It was hard for me to enjoy it because I was so worried about not knowing how long it would last. I think maybe it was just a coincidence, because I haven’t felt any relief since that small window.

I went to see another neuro closer to Los Angeles, he was recommended to me by more than one doctor, and when I got there, I realized why. He knew so much about Lupus, and even Addison’s, which really suprised me. I’m not used to people, even doctors, knowing about Addison’s. He even told me a story about how he helped someone he knows to get diagnosed.

He took a life-long medical history, and came to the conclusion that I could have Lupus Vasculitis. He ordered a Spect scan to check for cerebral vasculitis, which he thinks is the cause of my massive headaches. I’m hoping to get it done sometime this week, especially since this is headache week for me.

He did a full neurological exam and I again passed with flying colors. This has alleviated the worries I’ve had about possibly having Multiple Sclerosis. Vasculitis can sometimes present symptoms that seem like MS.

He told me to try butterbur for my headaches. I haven’t bought it yet, but I’ll write about it when I do. He says it’s fairly benign and doesn’t interact with anything.

He told me the nerve tests I had at the other neuro were basically useless. He thinks everything I deal with is the Lupus.

We talked about Chiari Malformation, and he reiterated what I had been told by the Chiari specialist. Even though my cerebellum dips a little below the foramen magnum, it’s not chiari. It’s just cerebellar ectopia, which doesn’t actually pose a problem, it’s just a trait of my particular brain and skull. There is no blockage, my brainstem isn’t being squashed, and my brain isn’t “malformed”. Since hearing this explanation again and a little more thoroughly this time, I’m gonna go with it. I’m glad I didn’t go and have brain surgery for no damn reason. Radiologists I guess tend to just say it’s chiari when they see low cerebellar tonsils. Believing I’ve had this problem has been absolute hell and I’m ready to take it off the table. The symptoms I have that I thought were because of it can be explained by other things. Other patients have told me that low tonsils means chiari but it seems like there have been medical findings among specialists that it’s not always the case, and it’s just not widely known by doctors yet.

I still have crap going on in the cerebellar area though. He thinks I may have vasculitis in that area, and it would make sense to me. If this is the case, no more benlysta for me. I have to switch to Rituxan. Rituxan sounds scary but I feel so horrible, and the benlysta hasn’t done a whole lot in helping me feel better. My blood work is decent, but what good is that when I feel so horrible all the time? If vasculitis and Rituxan are the answers to all of it, I’m more than ready to accept it and make the switch. I can’t keep going on in the amount of pain I’m in all the time. I’m hoping I’m on my way to figuring this thing out.







  1. Im going to bring this thread back from the dead and ask if we can email each other. My mri came back w a 5mm cerebellum ectopia that the radiologist says he feels is not chiari. Since then ive researched and talked tk people that insist I have it. Ive bbeen in a constant pnc attack until I read this. Thank you for posting. I wish they didnt use that diagnosis so loosely, with different diagnosis definitions. Im getting. Brain mri on monday to see if we can find anything else. Im nervous as my son has a lot of medical things and his dad isnt in his life. If something were to happen to me hed have just about noone. This relieves those fears. Thanks again.

    • Thank you for reading my blog, I too was quite panicked for a while. I’m glad it brought you some relief. I had a flow study MRI done and they didn’t find any fluid blockage. I have since been treated for the lupus vasculitis with the rituxan and I’m doing a little bit better in the headache department. I do get dizzy when I look down and my neurologist says it’s probably from the 6mm herniation putting pressure on my brain stem. My neurologist is really smart so I trust him more than I trust the “chiari specialist” I saw. I seem to have fallen in a “grey area” category in between tonsillar ectopia and chiari, my herniation isnt an emergency or even something that needs to be treated. People on message boards have insisted I have it too, but I’m glad I didn’t run in and get the surgery. I’m taking pamelor for migraines and getting some relief from that too. I hope your dr can find a simple solution like a migraine med to ease the symptoms for you. You can write to me anytime and let me know how your MRI goes.

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