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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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Hi Jo

Yes - this is just to say 'me too'.

I had similar tests in similar order to you and was very alarmed to be tested for MS. I knew nothing about SLE until I came on the site.

I have since been diagnosed with SLE, Hughes Syndrome / Antiphospholipid Syndrome, and Sjogrens Syndrome.

It is interesting that my symptoms are similar re. headaches, pins and needles - mainly in hands, headaches, visual disturbances. Before treatment I was very weary and slept a lot too. I mainly struggle with achy muscles and joints now, but it seems to come and go with no rhym or reason. Some skin problems in summer, but only a faint rosy, slightly lumpy rash across cheeks when i am at my worst. Lovely livedo reticularis around knees and loer thighs all the time.

It is interesting that Lazylegs mentioned MRI of thoracic spine as I have some problems there that amount to arthritic changes and a spot of scoliosis. I sometimes wonder if that causes the pins and needles and uncomfortable neck. It sure hurts my back when it is troubling me. It might be worth checking out?

Since treatment I have improved considerably, even though I do have bouts where i cannnot really get the aches and pains properly under control.

My visual disturbances were actually linked to migraine and this has been 'cured' with a small dose of a betablocker. I once 'lost' the left side of everything that should have been in my visual field. I have also experienced shimmering vision, and sometimes things would appear to be moving when they were not. I once spent a good 10 minutes trying to concentrate enough to make the towel holder in my bedroom stop moving downwards and to the right. Now all I get is a bit of blurring from strings of mucus moving acorss my eyes from time to time - far better!

Getting diagnosed and treated has really improved my quality of life.

You made me smile as i too get a tick in my left eye - always have done - especially when tired, but i thank heavens it is not noticable to others. Except children - they spot everything. I always seem to have hot palms and soles - is this linked to the condition, or just one of those things, do you know?

Anyway - a big welcome to the site. It might not be helpful, but it is a big 'me too'.

Take care.
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