Strange Symptoms of Late

Hi, This is the first forum I've every joined- I'm at a loss, and thought maybe someone would recognize a symptom and be able to help.

My daughter, now 27, was diagnosed with SLE when she was 20. Within the 1st year, she developed membrainous lupus glomerulo-nephritis- damage to her kidneys. She has had two pulmonary emboli, and resulting in the installation of a Greenfield Filter to protect her from further clots. She is on Coumadin, and will remain so.

Last year, she had a miserable, non-stop headache, which was finally diagnosed as "pseudotumor cerebri"- basically excess spinal fluid around her brain made it feel like her head was in a vice. That was resolved with a spinal tap.

Now, she has had a sudden-onset, localized head pain that started a week ago. It is located on the right side of her head, and she rates it at a 9 out of 10 on the pain scale. She spent three days inpt. at the local hospital, but all tests (CT, MRI, MRA) came back negative. IV morphine and dilaudid only brougt the pain to a 7. They sent her home on Monday, with no answers.

This weekend, we repeated the drill- 12 hours in ER, with no answers. New symptoms this week are very dilated pupils, (they asked if she'd been to the eye doctor, they are that dilated) and today, the entire length of her tongue is numb down the center. The area we live in sees a lot of young people with drug problems, so the ER docs. always assume she is one of those- until they see her list of meds and history.

Does anyone have any ideas or ideas to share? I'd be eternally grateful!

Jesse's Mom

[emtd65]

Hi,

    First let me say your daughter is very lucky to have a mom who cares and is by her side. I too have Lupus, diagnosed 11 years ago. I do not have any suggestions, but can tell you that I suffer from simular headaches which go on for weeks at a time with little or no relief. I have yet to find a neurologist who has helped me at all. I usually get the old stand by, "well you have Lupus, " when any doctor is at a lose. I too have been accused of making trips to the ER for the meds. Please, I have better things to do and have plenty of meds at home !  I have learned, through out the years, to request copies of all reports and films since what one doctor does not see another might. I wish you both the best and will keep you both in my prayers. Tell your daughter to try the support group at webmd. It has been a great help to me in the past. It is always good to know there are others out there like yourself.  

[seyf]

Lupus can commonly cause migraine headaches, and some of these migraines are so severe they can produce neurological symptoms similar to stroke. Migraines are one-sided headaches. Did they give her any migraine medication? These are specifically to shrink or constrict a dilated blood vessel in the brain. It is possible this is a repeat of the pseudotumor cerebri. She should see a neurologist ASAP. Lupus can also cause cerebritis, an inflammation of the brain, causing severe headaches. This is treated with high dose steroids.(rheumatologist)  Was the cause of the pseudotumor cerebri identified? Some drugs can cause this as a side effect, even tetracycline that young people take to control acne. An opthalmologist or any other doctor examining the retina could see swelling of the optic nerves if she has pseudotumor cerebri again, and a cause for that must be sought. I would get on the phone today, and get her into her rheumatologist, opthalmologist and neurologist ASAP. It may just be bad migraines, but there are good medications available to use for that so she isn't suffering.

[seyf]

Did anyone do a lumbar puncture (spinal tap) on her during this past week? That can check spinal fluid pressure (to make sure it isn't high-like in pseudotumor cerebri) as well as signs of infection/inflammation that may require anitbiotics or steroids.