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Hi Stella and welcome :)

The Lupus rash can come and go and range from mild to really really obvious.

It's entirely possible you could have Lupus. Are you saying they have diagnosed you with both MS and Sjogren's? What meds are you taking?

Have you seen a Rheumatologist who specialises in Lupus and other connective tissue diseases? That is best as not all are that well versed in Lupus. If you like you could ask in Find a Doctor Forum for recommendations from people in your area.

The presence of RNP in low range occurs in Lupus, if it's in the high range then it's more likely to be Mixed Connective Tissue Disease.

Do you know if any of them have tested you for APS- Antiphospholipid syndrome? The tests for that are anti-cardiolipin and the confusingly named lupus anticoagulant. It can exist alongside any of the connective tissue diseases or some people just have that condition alone. I ask because APS mimics MS in many respects and lots of docs don't think to test for it. Have you had any history of miscarriage or thrombosis?

I would start by trying to find a physician who you know is really involved with treating Lupus and is up on all the ways it might present. I would also strongly encourage you to get copies of all your actual test results to see just what has been investigated and what the results were.

Sjogren's can in some cases involve the central nervous system, I am guessing you have had an extensive neuro work-up and wonder how they came up with the MS diagnosis?

love
Lily
 

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Hi again Stella,

Disregard my previous reply.

I have just been back and read your past posts and discovered that you had a Lupus/Sjogrens diagnosis from St. Thoms. I would trust that diagnosis, they are the experts after all.

As mentioned you can have central nervous system problems from either, and it sounds like it's very possible your initial presentation which led to the other doc diagnosing MS could very well have been the onset of Lupus. It's not uncommon for Lupus to present like that attacking the nervous system as it's first target and confusing all and sundry. That's what happened to me except after extensive testing MS was ruled out and eventually Lupus, Sjogren's and Central Nervous System Vasculitis confirmed. It was quite a journey (for want of an acceptable phrase that won't get me censored :lol: ) which is why I posted some information for those people with similar symptoms/scenarios. Many of us were considered to possibly have MS early on in our investigations.

Here is one of several posts in the Symptoms forum I did about CNS presentations of Lupus:

http://www.thelupussite.com/forum/showthread.php?t=48000

I assume when St. Thoms did your APS bloods that they came back negative? That makes the prospect that the initial presentation was more likely Lupus related than APS, but APS bloods can jump around too. So they just may not have caught it at the time as they weren't looking for that. What tests and abnormalities were carried out to confirm your MS diagnosis?

More importantly who is looking after your needs now and which meds are you on? Do you have any remaining problems that could be pointing to involvement of your CNS? If you haven't already I would go back and see the St. Thoms team, especially given the addition of your latest symptoms.

love
Lily
 
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