[jojo1608]

Hi
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

Jo

 

[Katharine]

Hello Jo and welcome

There are quite a few people here who have had suspected MS become either lupus or APS (Antiphospholipid syndrome - aka Hughes syndrome aka "sticky blood).

Many APS symptoms are quite similar to those in MS and I should think that the blood tests he has asked for include those. One of them is confusingly called the lupus anticoagulant test but it is a test for APS and not lupus.

The doctor is probably also running other tests such as ANA (a screening test for many auto-immune diseases) and possibly more specific antibody tests which can determine which type of auto-immune disease.

The symptoms of lupus are so varied that many of us here may share some of your symptoms but not all, others will share other symptoms...

bye for now,
Katharine

 

[lazylegs]

Hi Jo,

The doctors initially thought I had MS, but the usual tests all came up negative. After years of testing I found out I had Lupus. The way I have it really mimics MS with the nerve and muscle involvement.

Some of your symptoms are similar. I do have tingling and numbness. Initially it was just the lower left leg, then it spread to the right. Finally it went to the arms and face. The headache kicks in when I am flaring. Occasionally the feet will really burn due to the neuropathy. My MRI's also show white matter lesions that are not in the typical pattern for MS.

Was your MRI of just the head or did it include the cervical and thoracic spine?

I hope you get your results back quickly.

Take care,
Lazylegs

 

[Zoi]

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:

http://www.thelupussite.com/forum/sh...ad.php?t=52667

You might also want to visit: www.hughes-syndrome.org 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:

Zoi

 

[ALWIN]

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.

 

[lin]

:welcome: jo, i think a lot of us have been through the same as you, you will feel better now that you have somwhere to come like here,
its a god send hey? hope to meet you in chat one day. take care Lin xxx

 

[KarolH]

Hi Jo and welcome to a great place.

I was dx with MS in 2005 and just recently, in May, my blood work started to clearly show Lupus.

Long story short, I no longer carry the dx of MS, instead it is Lupus and APS.

Hang in there. Eventually I believe that things do show up in the blood work and help to paint a clearer picture.

You have found a great place for support and information.

I hope to see you in the chat room sometime.:wink2: