I just wondered because it seems like lupus has so many non-neuro symptoms.........why is it considered so hard to distinguish from MS?? WOuldn't the other non-neuro symptoms make it clear that one had lupus instead of MS? These are the two possibilities my docs are looking at, and I just don't understand why it is so hard to distinguish between the two. BTW - for what it's worth, the docs think more lupus is what I am dealing with........I think more MS. I don't know which of the two is scarier!
I'm not sure why is difficult to determine the difference...but isn't Lupus decided by a blood test...is you have antibodies? Does anyone know? I know if you have high ANA but that can be MS or Lupus...but the antibodies for Lupus are different... how common is it to not have the antibodies for Lupus and still have Lupus? Is that possible...
sorry, I'm just adding more questions aren't I... oooppss..
maybe someone with more knowledge can help here....
I'm in the EXACT same boat as you. My last round of doctors in Oklahoma (ENT, neuro, & Pain Specialist) ALL decided it was Lupus. I had just been referred to another 'new' Rheumatologist (last one said I did NOT have Lupus...although, she never ran anymore tests), whn my husband took a better paying job in here in Montana...so, I never got to see her. So, here I go again with the whole "musical chairs 'doctor charade!' I've just been referred to a new Rheumatologist here. I see her next Wed. I'm anxious to get this going again.
I started a new topic called "Open MRI vs. Closed MRI." Since my MRI's were done on a "weak" open-unit, I'm going to request another set of MRI's on our local hospital's 3Tesla "Closed" MRI machine. Just maybe, they'll find something this time. I'm also going to request a Lumbar puncture, as I've never had one. I passed an EEG, EMG, & Visual Field Test, when I took my MRI's 2 yrs ago.
Like you, I only exhibit 'neurological' symptoms...none of the other "hallmark symptoms" of Lupus...such as the facial "butterfly rash", or skin problems, allergic to the sun, etc... I ONLY have neurological problems. So, I figure if it's not MS, then it's what they call CNS Lupus.
Yes, I've had 2 positive ANA's, but have been told that it could indicate Lupus, MS, or a number of other auto-immune diseases. So, they know that I DO have an auto-immune disease, just trying to decide which one. Have you had an ANA Test Mocha? How about MRI's, spinal tap???
MS and Lupus is very difficult to DX. Both share a lot of the same symptoms. But unlike MS, Lupus can be DX through a complete history and a series of blood panels.
Lupus is a muti-organ system attacker. When you have Lupus it can effect your skin, joints, kidneys, lining membranes (like around the heart, lungs, abdomen), blood, lungs and nervous system. MS attacks the central nervous system.
MS and Lupus do have some things in common as far as symptoms when in effects the nervous system but your doctors should be able to tell through blood panels if you have Lupus or not.
An ANA is a blood test to see if you are making antibodies in your blood that work against your own body. If you have a positive ANA it doesn't mean you have Lupus. Further blood test need to be done to confirm the results of whether it is Lupus or not. A positive ANA will come up in several other autoimmune disease. A Anti-ds DNA is a specific blood test for Lupus and will only come up positive in Lupus patients. If you haven't had this blood test done yet and you are worried about Lupus...see about it.
I do have a highly positive ANA (1280), but none of the other lupus indicators.......the high ANA alone isn't enough to diagnose lupus. I also understand that up to 30% of MS patients have a high ANA........though what I really want to know is HOW HIGH? I understand many have a moderately elevated ANA, but 1280? I do have joint pains and sun sensitivity, but also the neuro stuff.
I did have a negative 3T MRI two years ago (nine years into symptoms) and a neg. spinal tap (3 years into symptoms) and neg. EVPs (3 years into symptoms). The only POSITIVE thing is the ANA, which is not very specific.
THIS is why I am a mystery :((((((((((((( Does that shed any additional light on the matter to anyone???? Thanks for listening :)))
It is possible to be "seronegative" for an autoimmune disease ( 5% of Sjogren's syndrome are sero negative). Clinically ( based on symptoms) I have Sjogren's syndrome. ALL of the autoimmune blood tests are normal but I do have Schrimer test confirmed dry eyes, had a case of swollen parotid gland that wouldn't clear and arthralgias. They told me it was Sjogren's ...now they''re aren't sure. The last defintive test is a lip biopsy which I am going to request if not offered by the the new rheumatologist that my new neuro wants me to see. Sjorgren's can present as MS and cause lesions in the brain.
Bottom line you can negative blood work although it's rare.
Diagnosing autoimmune diseases can take a looooong time. It took months before my rhuemy at the CC would start treatment, even though my blood tests and symptoms shouted atuoimmune disease. He had to rule out any other possibilities first. It took me 8 YEARS to find a doctor who recognized what was wrong with my blood tests.
Hang in there. Once I started treatment my life changed 180 degrees. I still have to adjust medications, and add some here and there, but life is wonderful again.
As far as the Lupus rash...it was suspected I had Lupus, but I was missing the rash. Suddenly last summer, while the doctor was trying to sort things out, I became sensitive to the sun and the rash was awful.
So far my rheumy has named three autoimmune diseases, but at this point it really doesn't matter how many I have, because treatment is basically the same. I have monthly visits at the CC to see my doc and monthly blood testing to keep an eye on everything.
If you do have one or more autoimmune diseases the good news is you CAN fell better and life can improve.
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