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Discussion Starter · #1 ·
Hello,

Can someone tell me if there is a way to know if you are having CNS involvement? Is there a test to indicate involvement? I have SLE and Sjogren's but haven't had any CNS involvement yet. I am somewhat concerned about it though.

Thank you for any help you can give.
Janice
 

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Hello Janice :)

It is estimated that most of us have CNS involvement of some sort. Like lupus itself CNS lupus takes many forms and has differing degrees of severity. Symptoms of CNS involvement range from cognitive problems, which might be slight and only irritating to serious functional difficulties, to seizures and even psychosis. Other possible symptoms are headaches, mood disorders and anxiety, autonomic disorder, myasthenia gravis, various sorts of neuropathies, demyelinating syndrome and more. There are various causes or possible causes for the symptoms, and a huge range of specialised tests that might be ordered to pinpoint the cause.
Sometimes the symptoms might not be caused by lupus at all. The usual tests might reveal a relatively simple cause, such as B12 deficiency or another form of anemia.Infections can cause similar symptoms.

Sometimes effective disease modifying treatment improves symptoms.

I think the only thing to do is report all symptoms to your rheumatologist, who can then decide if specialist testing is needed and determine suitable treatment. Testing is expensive and sometimes invasive. It won't be ordered unless it's necessary.

All the best
Clare
 

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Hi Janice

As Clare says, most of us have some degree of CNS involvement. From my experience, significant CNS involvement is indicated by those neurological symptoms also seen in MS. These included gait difficulties, temporary loss of feeling in my legs, wasting of my calf muscles of one leg, mild visual hallucinations, visual auras and loss of red-green intensity in one eye. A brain MRI scan revealed multiple lesions.

What type of symptoms are you concerned about? Perhaps others can advise you further.

Take care

Merle
 

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Discussion Starter · #4 ·
Thank you Clare T. and Merle for you replies.

I don't have strong CNS symptoms, just the normal from time to time lupus stuff. I was nervous though when I just heard about the less sensitive sense of smell and if I read it correctly it sounds as though it doesn't effect reg. lupus but CNS lupus only? Am I making sense and is this correct?

When I saw on the news about this discovery (as new as it seems to be and maybe they really don't know yet) I became concerned because that is me! I have had a loss of smell over the years. In fact I have to have my husband check all our meat in the refrig. if I think it may have been in there too long. I can not tell if it is bad or not? Of course if it would be very spoiled I could tell and I can smell but it isn't like it use to be twenty some years ago.

I became concerned that if this is true to be in CNS lupus only then I might be heading down that road. That really scares me!!! :worried:

It has been a rough winter and spring isn't great either but I can't complain because there are so many others here that have it far worse than I do and my thoughts and prayers go out to all of you.

Thanks again for your help,
Janice
 

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Hi Janice,

Well I don't know about that study because I have quite serious CNS problems and my sense of smell is very acute :wink2: There are so many variables, people with sinus problems have a poor sense of smell........so the possibilities are endless.

love
Lily
 
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