Hi Everyone!
It's day 4 of lupus awareness month and I want to thank everyone for reading my posts and learning more about this disease.
Lupus can strike at any age, any ethnicity, even though women are more pron to lupus, men can get it too. In most cases you don't know you have lupus because the symptoms mimic so many other things. Therefore, doctors will try to "fix" a symptom you have. Trying to get tested for lupus, or any other autoimmune, can be difficult depending on your doctor and insurance. It can take up to 5 years to be diagnosed with an autoimmune disease. Especially for women.
In all of the many doctors I saw in the beginning, there was one who knew I had lupus and went back through my life on different illnesses or medical problems I have had. Every single one he could contribute to lupus. Especially head pain.
Changes in the brain during a migraine.
The relationship between lupus and headaches is complex, they can be attributed to various factors, including brain inflammation, vascular abnormalities or general flares. For me, after being diagnosed, was always thought to be inflammation and flares. It wasn't until 2013, on one of my annual brain MRIs, that I also have vascular involvement. I have hundreds of white spots on my brain. It's called white matter hyper intensities on the MRI. It impacts blood vessels changing the flow of blood and causing migraines and other problems. There is nothing to fix this. I take a migraine medication that works very well for me. Because of these brain abnormalities I have had seizures and TIAs, loss of speech, paralysis on my left side and lack of balance. However, I feel like something has changed because my head pain has subsided and I haven't had a seizure, TIA loss of speech or paralysis in many many years. My balance is better, but what does happen is my legs or arms go blank. Like they aren't there. I was told it is a disconnect from brain signals to my extremities. It is the strangest feeling ever. When it happens I just lay down until it is over.
Thank you for learning about lupus and just one of the many symptoms it can cause.
image from google
Nicole
11 comments:
I get occasional migraines with auras too. AT least with the auras I can take some Excedrin to try to prevent the worst of the migraine. I didn't know migraines were a sign of lupus either. I'm enjoying this and learning so much. Thanks Nicole.
I will be reading every day. I may not comment, but know I did read the post.
I have a weirdness called "ocular migraine" that is mostly just annoying, but it limits what I can do when it is happening. I see flashing zigzags of light in the outer edges of my vision. Closing my eyes does NOT help, it is still there.
What I usually do is go in a dark room and lie down until it passes.
...be a warrior!
So difficult dealing with these symptoms without much outside understanding or medical detective work. Good for you for keeping on -- and on.
We know so little about the brain, don't we. Interesting connection to migraines. Love the image of the Lupus Warrior!
Oh Nicole! That sounds so awful and scary! So sorry you have had to deal with this for so long.
The doctor who finally diagnosed me had somebody in his family who had it, so he recognized the symptoms. Even finally getting him it took about four months of testing to determine I didn't have all these other issues--from lupus to lyme disease to thyroid issues. There's no actual test for fibro so you only know through process of elimination. Took a few years to come across that doctor, though. Many doctors still don't believe it is real. I think mine may have been triggered by having mono from working two jobs and getting very little sleep for over two years. (No kissing involved--lol!) I never recovered and just got worse with a variety of new symptoms. Anyways, it is very frustrating--even though there are much worse diseases to deal with...like lupus. My heart goes out to you, my friend. Thanks for sharing the information and your journey. :)
I did not know it could strike at any age.
I had no idea that the brain played such a role in things. But I hear you about modern medicine starting at the bottom end and treating every symptom before it gets to the real answer. I'm just glad you have yours, as much as I wish the outcome was different.
It's sad that you had a tough time in school. Too many mean people in the world with no compassion for anyone.
You are a warrior and educator. Thank you so much for sharing. Hugs.
I would not be that strong to stand it, I reckon.
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