New to the community

[tbunny]

Hi all - thought I would introduce myself. I have lurked about briefly for a time, but decided to register finally.

I have had two CVA's, several TIA's, and an episode of TGA (transient global amnesia) all in the last couple of years.

I am diagnosed chronic neuro/psychiatric and systemic lupus, fibromyalgia, and antiphospholipid syndrome. I have been in an acute lupus flare since 1/2003, with no end in sight. My APS and following strokes were discovered following the loss of sight in my right eye due to optic nueritis.

I also display many signs of possible MS (spinal tap looks just like MS, MRI doesn't), but neuro feels it is more likely that it is the lupus damaging my CNS. He laughs and says he reserves his right to change his mind on that one though.

Although I have been through alot of pain and serious illness in association with my lupus, I must admit the neuro stuff scares me the most. To lose mobility and independance is a tradgedy, but to lose my mind to this disease is terrifying.

I look forward to meeting you all, and dropping in for support and information to get me through this.

[LIZARD]

Have your MRI checked carefully for Chiari Malformation. This is the herniation of the cerebellar tonsils in the lower back of the brain, so you'd need not just the head but the neck looked at, too. Chiari can result in symptoms very much like MS, and many patients are misdx'ed with MS as a result.

Most important: Make sure that any remarks of "minimal herniation" or anything remotely similar are not followed by a casual dismissal of the findings. For many patients, it doesn't take much herniation at all--often as little as a couple of millimeters--to mimic symptoms of MS and other illnesses. If any herniation of any size is found, you'll need a neurosurgeon (NOT a neurologist!!) to examine your films carefully and determine if you need surgery.

Good luck to you, and please let me know what you find out, okay?

LIZARD :)