Headache MRI stuff

Well after a few days of awesome phone tag, partially my fault, I heard from the neurosurgeon. According to the cine MRI there is no blockage in flow of CSF. He is still sticking by his opinion that I don’t have Chiari despite having “low cerebellar tonsils”. And he is also sticking with his pain explanation that I have weak neck muscles and a long thin neck trying to support a regular-sized head, and that I need to continue isometric neck exercises. Needless to say I’m still confused on how that can be possible, because I feel like it goes against everything I’ve experienced, but I’m also thinking about the future and how to investigate other causes for my pain. I’m still planning on being involved in the Chiari community because I’m not sure I completely agree with the NS at this point (mind you he is one of the best chiari specialists there is, ever. So I feel like an ass questioning him). I still have wonky symptoms and bad headaches that I can talk about with fellow chiari people. I still need to vent about my Low-tonsils-with-headaches-but-not-chiari situation. 

Not sure why they’re called tonsils, but they’re not your throat tonsils. It’s just a section of your brain. Just for clarification.

If I really don’t have chiari, I’m interested in being screened for neuropathy in the trigeminal and occipital areas. The headache pain I have is so intense, and really hard to treat once it hits. I still don’t think it’s migraines. I don’t get auras, and I always have neck and back involvement. I’m just hoping it doesn’t take them 900 years to figure out what the fuck is going on because in the mean time, I have a headache every day. Yeah.

My rheumatologist wants me to see a neurologist to screen me for neurological disorders that could be causing my widespread pain/weakness/GI difficulties. She’s not sure if the Benlysta just isn’t helping my lupus or if there’s another cause to all the issues I’m still having. I’m worried about what that could mean for me. I don’t really want to be diagnosed with something else. But on the other side, if they figure out what it is, maybe they can treat it, and I won’t have to be crippled by pain on a daily basis anymore.

I don’t know. I’m just tired of the roller coaster I’m on. And I’m tired of being in pain. I can’t keep up with my hobbies and my social life is nil because people don’t have the patience for me. It’s getting old.

Benlysta, flow study, flu shot

I noticed I had a little boom in views on here last week. I don’t know why, but thanks. 🙂


I had Benlysta #whatever last week. I’m losing count. But next month it will be one year. The doctor, my mom and I are all sort of on the fence as to whether it’s helping or not. Before this past infusion I was waking up in the morning like I used to, a writhing ball of pain. But then I noticed after I had it, I wasn’t waking up like that anymore. I still hurt in the morning, but not at 4am, and not on the same pain scale. Also, the itching has seemed to quiet down in my legs. At the same time, while of of that is great, I’m still unable to do activities at a normal and relatively pain-free level. I just feel like I’m not where I should be at. I’m still ruled by the sickness. I have this muscle weakness I can’t seem to pull myself out of no matter what I do. I’m also having some pretty terrible digestive issues, along with other things. My rheumatologist seems to think this points to a neurological cause, and I don’t disagree, but I wonder how much of it can be attributed to the chiari. She wants me to see a neurologist to investigate, but I’m going to push that appointment off until I see the neurosurgeon again.

I had a cine MRI flow study done on Monday. It was just like having a regular MRI, but I wore a little heart monitor on my finger. They are of course looking for a blockage, a finding that would explain a lot of things. I’m hoping to get answers on that soon. I want to know what’s going on with that before I see a neurologist. The neurologist doesn’t seem to think any of my symptoms are chiari-related, which is pretty typical of neurologists. I want to go in there and tell him what the neurosurgeon says before they go all spinal-tap on me. I don’t really want to think about possibly having another condition right now, so I’m just not.

In other-yet-still-related news, I got the flu shot. I’ve never had it before, but my rheumatologist “strongly urged” and after talking to some other people in support groups, I decided just to get it done. The idea of the flu really bothers me this year for some reason, I’m not sure why this year in particular. It’s always been a worry but it jumps out at me this year. Normally I just avoid being out in public a lot during flu-season. I’m not a Black-Friday goer, I’ve lovingly dubbed it Black-Fluday, and I’ve always tried to avoid similar situations. I’m a frequent Hand-Sanitizer user when I do actually go somewhere. I avoid touching my face, wash my hands, yadda yadda. I’ve managed to stay relatively healthy in that respect, but this year it just seems like it would be especially devastating to be put in the hospital for something that may very well be avoidable.

Having said that, my arm hurts. And so does the rest of me. I felt nothing until last night, which was more than 24-hours later. I was really tired, my heart was pounding, and I was really nauseated. Not to mention the trail of muscle spasms that went up my arm and into my back and neck. I’m unfortunately on my cycle right now too, so I’m sure some of that could be attributed to that as well. I feel OK right now, aside from the arm soreness, and typical pain to which I wake up.