Clickable: LUPUS INFORMATION & LUPUS RESOURCES.
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I was in the opposite situation, with ms being ruled out first. My neuro explained to me that indeed, ms and lupus can happen together. He mentioned some type of complicated overlap, but at that point, I was so sick, I didn't care what the heck they called it. My CNS symptoms certainly felt like MS to me, but my MRI and MRA were normal. Either way, we certainly enjoy our symptoms. My rt.sided HA is often accompanied by rt ear pain and impaired hearing, with my left leg being numb and tingly. I always fall to the right, though. Hang in there, and rest, rest, rest. sue.
It is so reassuring to know that my life with symptom after symptom of cns involvement, my lupus reality, is understood (and gee, doctors, suffered with) by so many. On a happy note, I just participated in a lupus study in Buffalo, specifically on cognitive deficits in pts. with lupus, and am hearing that more and more studies are showing that cns lupus is far more common than ever suspected, and being diagnosed much more readily. So that is cheery news. Did I whine yet that today I am absolutely, bone numbingly, tired? Hugs,
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, ValtrexLinks: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions
I'm sorry you're suffering through those symptoms, and I know it's probably a bit scary. I haven't had actual dizziness, though i've had times when laying in bed I felt like I was moving. I also get buzzing sensations all over the place, on the bottom of my feet, the back of my head, my neck, and down one side of my spine. And...I too, have been getting numbness in my face. Mine has happened only the right side so far, mostly in my cheek area. Like a circle, it gets numb from the outer corner of my upper lip, the very outer corner of my nose, up and around below my eye, then down towards my chin, and back up to the outer corner of my bottom lip. It's been completely numb where I had no feeling in it. Another time, I had a very icy-hot feeling, then tingling, then it went half-numb. Both times, the numbness did wear off after a few hours. My ears don't get plugged up like yours, but I do get ringing and right before the ringing starts, it's feels like I just lost my hearing, then the ringing starts, but then I can still hear. I have no clue what is causing my symptoms, though. I didn't describe it all to my Rheum, as I get a feeling he is not too interested anymore, but when I said I didn't understand why I get nerve pains and severe muscle spasms all over the place, he said it was probably fibromyalgia. But I've not had any kind of testing done to check into this all.
Post Edited (SSDore9240) : 11/16/2008 5:18:08 PM (GMT-7)
Hi! Everyone, Hi! Lynnwood,
I am so sorry for the delay in this note, I just happened upon the thread again. It would have been fine to have emailed me separately from our forum. I am so grateful for this support group. And as a nurse who teaches, more than happy to help and share in anyway I can. The study I participated in was the SADRC of WNY, Systemic Autoimmune Disease Research Center at Buffalo General Hospital of Kaleida Heath, January 2007, study on cognitive function in Lupus. I went to the Division of Developmental and Behavioral Neurosciences on the 6th floor in one of the worst lake effect snow storms I can remember! Janet L. Shucard, Ph.D., was the contact person at the Department of Neurology. I was in awe at the resources compiled for such an important reason, and grateful for the chance to participate.
Lynnwood, thanks especially for your time to "moderate" this forum. I would be happy to send you my email. I was told the data would be publishing @ 2 years, so I have been watching.
p.s. re: ms vs cns lupus, or fibro, my neuro doc offered me a spinal tap to more conclusively dx ms/lupus overlap, which he said was EXTREMELY rare and unusual, and I declined, in part because the risks didn't outweigh the benefit of knowing as my meds were helping so much. The agreement was another MRI and spinal tap would be reconsidered if I have a flare bad enough to put me in the hospital. I never had specific pressure site pain, so fibro was ruled out quickly by my PCP
Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, ValtrexLinks: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions
"Life is far too important to be taken seriously." –Oscar Wilde, 1982
Post Edited (MissStacey) : 3/30/2011 8:31:35 PM (GMT-6)