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Not MS now Lupus?

433 Views 6 Replies 7 Participants Last post by  KarolH
I have just found this site as I have just had blood taken for Lupus tests. To cut a very long story short I have been tested for various things over the last 2 yrs (MRI, blood tests, Lumbar Puncture)

I had eye disturbances which led me (after a year) to a Neurologist who has performed tests for MS. These have come back as a "negative for now". He has recently sent me off for the various Lupus blood tests.

I just thought i would list some of the stuff I have as I am very confused to see if anyone is in the same boat or if anyone has any words of wisdom

Here goes
My MRI came up with areas of inflammation last year. Neuro couldn't say what has caused it.

I have had intermittent attacks of pins and needles, always down left hand side usually in hand, arm and sometimes leg.

Face numbness. Most mornings wake up with a slight numb feeling in mouth, can progress to cheek.

My hands swell in the heat and my feet feel burning hot.

I have recently had a on/off tick in my left eye which is not noticable when you look at me but I can feel it inside.

When tired I get a headache, again down the left hand side of my head.

I have noticed that I get intermittent small clear liquid filled blisters on the palms of my hands. These itch. Again seem to appear when stressed or tired.

I think thats it. Thanks for reading 'my story'. I hope some of you can help! Even if its just to say "Me too".

Kind regards

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Hey Jo and welcome to the forum!!

I went through a small MS or what? debate before I was diagnosed with cns lupus and aps. I had several brain MRIs that were perfectly normal and had no oligoclonal bands in my cerebrospinal fluid.

Like Katharine and Lazylegs have said there is a syndrome some people with or without lupus have that causes blood to clot more easily than it should; it's called Hughes' syndrome or antiphospholipid syndrome and it can cause MS-like symptoms... Do you have any idea if you have been or are being tested for it?

The tests for Hughes' syndrome are the anticardiolipin antibodies and the lupus anticoagulant. They are blood tests and can be easily run at most labs. You can find the classification criteria for Hughes' on top of the "related conditions" part of this forum:

You might also want to visit: for more information on APS.

Are you receiving any treatment for your symptoms at this point? Are you being referred to a rheumatologist or is the neurologist waiting for the lupus blood tests to come back before referring you? In any case your neurologist sounds very well-informed and thorough! :)

Ah! One other question actually; when you say you had eye disturbances what do you mean exactly? Have you seen an eye doc for this?

Hope you get to the bottom of what's going on soon!:bigsmile:

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