Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello everyone, experienced some weird stuff lately and am part way through investigations. Hoping to get your advice/input. I'll try and keep it brief so here goes.
I have SLE (diagnosed 2005).
In October I got a very strange headache, not anything like usual Lupus induced or migraine (have had lots of both). This headache was extremely debilitating and was only on the right side of my head, lasted for a day or so (kind of a crushing type thing with odd visual disturbance in right eye). The day the headache subsided I experienced left-sided hemiplegia, numbness, heaviness, lack of sensation and delayed movement (like a gap between brain/limb)also fell a couple of times (was tripping over left foot). After a day or so, symptoms subsided with only numbness in little finger, side of hand and up to elbow.
Saw my GP who ordered CT scan of brain and referred me to Neurologist. GP's concern is Lupus affecting brain or MS. CT scan presented as normal. TIA/Stroke seems to have been ruled out (so far).
Have since met with Neurologist, who has ordered the following tests. He also was concerned I may have NeuroLupus or perhaps MS.
He is writing to my Rheumatologist to update him of the situation.
1) Echocardiogram and Resting ECG (notes: Hemiplegia/Cardiac Involvement?/Libman-Sacks Endocardosis?
2)Doppler Scan of Carotids (unreadable notes!)
3)MRI of Brain (notes: NeuroLupus? Vascular Pathology?)
4) Cognitive Testing.
These will take place over the next few weeks, along with the usual Bloood/Urinalysis and a visit to my Rheumatologist. I have been advised to stick with my current drug regime and if I get a repeat of the paralysis to contact the Neurologist immediately (fingers crossed I don't have to!).
Anyone else had a similar thing? Are there any other tests/questions that I should be pursuing?
I'm done with being angry and feeling ripped off, (thankfully!) and am on the "research" trail. I feel the doctors are pretty switched on and doing a good job, but thought I would run it past the group as you really are the true experts!
Look forward to getting some feedback....love, light and peace to you all.
I have SLE (diagnosed 2005).
In October I got a very strange headache, not anything like usual Lupus induced or migraine (have had lots of both). This headache was extremely debilitating and was only on the right side of my head, lasted for a day or so (kind of a crushing type thing with odd visual disturbance in right eye). The day the headache subsided I experienced left-sided hemiplegia, numbness, heaviness, lack of sensation and delayed movement (like a gap between brain/limb)also fell a couple of times (was tripping over left foot). After a day or so, symptoms subsided with only numbness in little finger, side of hand and up to elbow.
Saw my GP who ordered CT scan of brain and referred me to Neurologist. GP's concern is Lupus affecting brain or MS. CT scan presented as normal. TIA/Stroke seems to have been ruled out (so far).
Have since met with Neurologist, who has ordered the following tests. He also was concerned I may have NeuroLupus or perhaps MS.
He is writing to my Rheumatologist to update him of the situation.
1) Echocardiogram and Resting ECG (notes: Hemiplegia/Cardiac Involvement?/Libman-Sacks Endocardosis?
2)Doppler Scan of Carotids (unreadable notes!)
3)MRI of Brain (notes: NeuroLupus? Vascular Pathology?)
4) Cognitive Testing.
These will take place over the next few weeks, along with the usual Bloood/Urinalysis and a visit to my Rheumatologist. I have been advised to stick with my current drug regime and if I get a repeat of the paralysis to contact the Neurologist immediately (fingers crossed I don't have to!).
Anyone else had a similar thing? Are there any other tests/questions that I should be pursuing?
I'm done with being angry and feeling ripped off, (thankfully!) and am on the "research" trail. I feel the doctors are pretty switched on and doing a good job, but thought I would run it past the group as you really are the true experts!
Look forward to getting some feedback....love, light and peace to you all.
Have your rheumatolgist advocate for you. He/she knows your situation the best. What will happen if you get involved with a slew of doctors, you'll run the risk of running too many tests as well as misdiagnosis.
Are your family members observing any erratic behavior from you? That's also a possible indication of lupus-related CNS involvement.
From personal experience, don't let them do any other tests besides the MRI (get both with and without contrast) and the lumbar puncture unless your rheumy blesses off on the others. Make sure your rheumy gets the results from those tests first and let him/her decide the course of treatment for you.
Have you been tested for APS by the Beta II Glycoprotein blood test? If you have NOT had this blood test, I would demand your rheumy do it. It is common for Lupus people to have Antiphosholipid disease which causes TIA's, strokes, blood clots & heart attacks. It is also common for APS people to develope SLE (which is what my rheumy now thinks). TIA's are not always visable in an MRI or CT scan. It sounds to me that that is what you may have had (a TIA) and if you have the Beta II glycoprotein test done and it is elevated/positive you will need to be treated for APS as well (which may just mean adding a baby aspirin or plavix to your meds). This test is not commonly used, the anti-cardioplin test is used and it is NOT the gold standard test for APS. The Beta II is the gold standard blood test for this auto-immune disease. It is very similar to lupus but can actually be more deadly (I have primary APS). You can do something very simple and safe while you are waiting. PLEASE take one baby aspirin every day. If you do in fact have undiagnosed APS/Hughes disease, an aspirin can save your life.
Let me know if you have any questions. Im pretty knowlegable about APS....More than many rheumatologists!
Melissa
LOVE AND HUGS HELYN
I am so sorry ...you are in my prayers.