I have been musing on if those of us who have either a connective tissue disease or autoimmune disorder have a higher tendency to developing brain aneurysms. I did find a research paper that indicates those of us with autoimmune disorders can rupture at a smaller size Association between underlying autoimmune disease and small aneurysm size at rupture - PubMed. I wasn’t diagnosed with DM until a few years after my rupture. I wonder what other members have experienced. Anyone else out there with these issues?
I was diagnosed with Sjogrens and the neurologic symptoms are the worst for me. I was diagnosed and started meds after my second flow diversion. I’ve often wondered if it is what interfered with my healing and caused the aneurysm on the left to start growing. Luckily it was caught before rupture during an angio followup for the other one. Too little it known about autoimmune diseases and people with one frequently have another diagnosed at some point. And many remain undiagnosed. I have an appt in July to check other connective tissue diseases that may be present and linked to aneurysm development.
It does seem a boulder starts rolling downhill and soon becomes an avalanche of health issues. My Rheum has me doing blood work every two months but I finally got down to seeing her twice a year. I’m extremely grateful for the Upper GI doctor I had who did the plethora of tests and told me to have the PA at the dermatologist’s office to do a biopsy. I wish I could remember what he said but I can’t. He thought they were just fatty tumors until he did the biopsy. Then he opted not to do the other tests even though the biopsy came back as positive for SLE or DM due to the expense. So I waited several months to get into the Rheum, I guess his office that made the appointment didn’t tell him how long I would be waiting. It took many, many months for the bloodwork to actually show up that it was DM. Because of the biopsy results she did start me on hydroxychloroquine. Then she had to add methotrexate and recently up it because I lost two teeth. I didn’t know losing teeth was related to CTDs, I do now. I see my Neurosurgeon next month and I’ll ask her about it. I have got to start making my list of questions😂
Sounds like were on a similar trajectory. I’m on hydroxychloroquine and about to go to methotrexate after my July appointment. I might push it until after my next angio is done in August so i don’t have any new side effects to add to the stress of the next angio. They’re pretty commonplace for me now but i do travel a couple of hours for them, so I’m thinking I’ll start a week or so afterward. Im planning to start an autoimmune diet soon to see if I can slow this down.
I don’t recall methotrexate giving me any side effects, it takes a long time for it to get built up in the body. Talk to your Rheum and your Neurosurgeon. I don’t follow an autoimmune diet and perhaps I should. I am very active and my symptoms are a conundrum to my Rheum but she says I’m the most active patient she has and that may be part of it. I think she and my Neurosurgeon just tossed the books away because I don’t fit into a box😂. Staying active is probably the best thing I do, even if it’s a walkabout which I couldn’t do much three to four years ago because of the pain. But I am a stubborn old broad and refuse to give in.
Hmm…cfs, hs, and hypermobility…so perhaps so.
I didn’t know what hs was so I looked it up, man that sounds painful! My bumps are on my torso mostly over the ribs. Thanks for teaching me something new!
Sjögren’s, hashimoto’s, and pernicious anemia so far but I have a congenital venous malformation on top of it so I’m having an angiogram in a few weeks and will most likely have a procedure a month or so after that. I’m on hydroxychloroquine, gabapentin, and armour thyroid. I also have trigeminal neuralgia just for fun
Dang! “Holy hole in a donut Batman!” That’s all I can think of to say with everything you have going on. You must be an amazingly strong person!
Continuing the discussion from Connective Tissue Disease/Autoimmune Disorders and brain aneurysms:
Sjögren’s, hashimoto’s, pernicious anemia so far and trigeminal neuralgia just for fun. I have an angiogram scheduled for 7/14 and will probably have a procedure a month or so later. I have a congenital venous malformation which caused my aneurysm. I had a small stroke last fall and in the scans for the stroke they found the aneurysm. So I guess it’s thanks for the stroke
Oh my, you have a LOT going on. Not sure how any one person can be expected to handle it all. Best of luck on everything, and on the upcoming angiogram. I hope it goes well.
Oh my….You have a lot going on! Remember that it’s not necessary for you to go through the entire medical literature! Says this retired RN to you.
When I got my stent and additional coils after my rupture, I told the ICU night shift RN that when I moved to the USA, I was curious about how the healthcare system worked from the inside, then I said “and look at me now “
My RN replied “you have to be careful about what you wish for “ then we both laughed.
Good luck with everything!
Of course I have already gone through all the literature. I research everything
Here’s a suggestion so the person you’re specifically asking a question knows it’s for them…just reply directly to their post so you see their avatar (profile picture) and user name at the top of the box. Yours is a green P and Pank follows behind the circle. The other way is using the “@“ and then their user name. So I’m guessing you’re directing this to @oct20. Remember we don’t have to tell anyone exactly where we reside in order to protect ourselves but members can tell if the chose to. Just not put down personal emails or telephone numbers as then I or @ModSupport has to remove them.
Another way is to have a private conversation where no one else can see what you’re discussing. In this scenario you click on their user name and you will see “message” come up. Click on message and send them a direct message.