Neurologist
I was diagnosed with Lupus a year ago. I have been on varying doses of Prednisone since then, along with plaquenil and blood pressure meds.
Last month, I had my first experience with a seizure. Followed by a week in the hospital, my first hospital stay. I was in the ER then ICU for 2 nights.
Lupus in the brain is what I was told. Inflammation in the brain.
I had been having a fever that would spike every day to 103° for a month. Could hardly get out of bed during that time. The day of the seizure, I couldn't form sentences, or find the words to even form a sentence. I was shaking bad. Could not remember simple things, like the pin number for my phone. Thankfully my husband came home from work before my episode.
I was put on high doses of Prednisone (60+mg) for the hospital stay, along with some antibiotics. Which messed up my blood sugar, so I had insulin shots for a few days.
I had memory loss for a few days. Couldn't remember what Apt # I lived in. My ss#. Couldn't tell you what time it would be 35 minutes for now with a clock right in front of me. Could only think of 3 animals to name.
The doctor at the hospital suggested a visit to a Neurologist after I got out.
Anyways, it's been over a month now since then. I have recovered all my memories and can speak with clarity. My muscles are getting stronger every day. (I could barely walk on my own at the hospital, fall risk)
My question to put out there is this:
Is a Neurologist going to do any good?
Does anyone have any experience with them?
Having no memory issues now, what could be the result of seeing a Neurologist?
That last one probably won't get an answer, but that's ok.
Thanks for listening!
, I'm so sorry to hear about your recent stay in the hospital and developing new symptoms. I don't have personal experience seeking treatment for lupus brain inflammation from a Neurologist, but I thought I would share some articles about lupus and the brain: https://lupus.net/central-nervous-system, as well as lupus and seizures: https://lupus.net/symptoms/seizures. I hope this helps in the meantime while we wait for others who can relate to chime in! Thank you for sharing with us.
Gabby (team member)thank you Chop, so sorry to hear about your recent problems, sounds horrible and I know I'd be scared to death as I'm sure you were. I have had lupus for over 30 years now and I have had many problems with it, but brain lupus has not been one of them. I do see a neurologist but this is because I do have neuropathy which is medication induced from the antibiotics that have been used on me. 2 years ago for almost 2 years I was in and out of the hospital almost every other week. I'd be in for 7 to 10 days with double pneumonia and sepsis. Almost died more than once but my lupus has really damaged my lungs a lot. I wish I could answer more and then urologist question, I would talk to you a neurologist and ask them why they think you should continue to see them. Maybe this is something that they need to continue to watch.
you have been through so much. I’m so happy you had someone there before it all happened. It’s good that you are healing and feeling a little better. CNS lupus as sent the article for is real. If anything a neurologist would help to put your mind at ease and help sort it all out. I do not have CNS lupus but those that I do know have stated their neurologist has helped them. I am holding space for you to continue to get better. ~Racquel~ lupus team member
