multiple areas of increased signals on MRI

At age 25 I suffered headaches, ataxia, & a dense left hemiplegia W/ (+) SSA & SSB antibodies. I was diagnosed w/ MCTD w/ ? Sjogrens. Tx'd w/ steroids, plaquenil w/ no sequela. In 6/2000 I had a (+)lip biopsy for Class IV Sjogren's and started on methotrexate. I was also have photosensitivity, rashes, and severe arthritis. In the summers of 2001 & 2002 I had episodes of severe ataxia & gait disturbance responsive to steroids. In 7/2003, at age 39, I began having a series of falls w/ associated severe ataxia, headaches, and subsequently a left hemiplegia. I was found to have a left pontomedullary infarct, small foci of increased T2 signal in the subcortical white matter of both frontal lobes and in the white matter of the right parietal lobe, and a punctate focus of increased signal in the left extreme capsule. LP studies (-) for MS or infectious causes. Diagnosed by my rheumatologist as lupus cerebritis & vasculitis and started on high dose IV Cytoxan & Decadron. I'm ANA(-), all hypercoag studies (-). After 9 mos of high dose Cytoxan & steroids all lesions disappeared except for the chronic pontomedullary infarct. I was also diagnosed with ?coronary vasculitis on cardiac cath & EF fell to 50%, but now improved. I saw a neurologist at Mayo Clinic Scottsdale who disagreed w/ the diagnosis of Lupus as my blood tests were (-), but agreed I had Sjogren's and the chronic infarct. I've never had an MRA or cerebral angiogram and I'm very concerned about a recurrent episode. I need assistance seeking a neurospecialist who would be familiar with this disease process & tx. HELP!!

[CCF-Neuro-M.D.-CS]

It sounds as though you have some form of a CNS inflammatory disorder or vasculitis. Without seeing you and reviewing the tests, I can not be certain. I would recommend a consultation with a neurologist who specializes in Stroke. We have an excellent department here at the Cleveland Clinic. In addition, Dr Leonard Calabrese is a rheumatologist who often works with the neurologists on most cases of CNS vasculitis. If you can travel to Cleveland, these are the doctors I would recommend. The main number to the Cleveland Clinic from long distance is 1-800-CCF-CARE. Good luck.

[hewie1]

tsoto,

You've had enuf! I've not only posted here too but studied MS, Lupus, Sjorgren's, MCTD & other CTD's extensively in an effort to try to place my symptoms (no avail! - the symptoms can be so overlapping as you already have found out) so that I can focus on what is out there (medically & holistically) to at least TRY to get some relief from my own personal ever-increasing illness.  It "all too often!" I have come to believe is a very difficult process for both the physicians & the patient.  I don't have any answers but really hope a physician here can give you some direction....

to me... that alone would help...=)

I hope & pray for real, tangible blessings to be with you soon in this area of your life & will be watching for the doc's reply..

GOd Bless.... Hewie1