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Discussion Starter · #1 ·
Hi everyone :)

I was actually a member of these boards a couple of years ago although I never posted a lot, and now can't seem to retrieve my membership!
It's been about 18 months or more, and you've certainly done some changes 8)

I can't actually remember my username before, it was probably Evie?

Anyway, to reintroduce myself, I'm Eve and I have had a lot of symptoms of Lupus on and off for the last 10 years, though my body has never obliged to produce the right anti bodies to get a dx yet. Although it's given some "suspicious" results to do with WBC, proteins and inflammatory activity.

So far my history includes arthritis and joint pain, nephritis, repeated blood and protein in urine tests, rashes including the face, mouth and nose ulcers, hair loss, fatigue, brain fog, one episode of pleuresy, a minor stroke, still unindentified UV sensitive skin sores, UV triggered migraine-type headaches and lots of neuro problems.

I've had a neuro flare up over the last couple of months, and a waste of space referral (more elsewhere) and am in limbo. My GP doesn't really get the Lupus history, and thinks it's MS. I was thinking along those lines as well as I had no other lupoid-ness with the neurological symptoms like I did last time. Until now.
Anyway, for the last 2 years I've lived with dizzy spells, some vertigo, spacial awareness problems, noticeable muscle weakness on my right side (not related to the stroke BTW) and I can't use my right hand for things like writing, mixing, dispensing petrol or squeezing aerosols, and I now have limited movement in the right side of my face, and am struggling to empty my bladder (TMI :blush: )and am still having further to tests to investigate that with urology, but they believe at the moment it's neurological as well. All these symptoms are getting worse again now and have been for the last 2 months or so. But the neuro has just tried to sign me off with no further tests/MRI or even a proper neuro exam or history after a ten minute appointment when his clinic was running late :mad:

I guess I've come back today because the sun has come back and I couldn't resist spending time in my garden - big mistake :eek: I was knocked out for about 3 hours and couldn't get out of bed, my hands are red and itching, my face rash has burned into life, and my left knee has swollen up. This was after my GP also mentioned this morning in an appointment about my urine retention that all but one of the urine dips I've had since I moved there (nearly 2 years ago) have shown trace blood and protein. But not enough to cause concern - to someone whose been in hospital with nephritis before?!

I'm really struggling with docs at the moment, as you can probably tell :hehe:

I know it's time to gather my strength and fight them for a referral back to rheumy and try again with the bloods. What it's doing to my nervous system worries me, but everyone else seems to be moving in slow motion. And they don't like the fact I say I think I have Lupus. I say I can't help having common sense and the ability to do some research!

I'm feeling very tired and fed up right now, and the need for some support :worried:

It's reassuring to be back among people I know will understand xxx

7,800 Posts
Welcome back Eve :)

I wasn't around when you last were so don't know what your user name might have been...

I'm sorry to hear that you are still no further in your diagnosis journey :(

It certainly is time you fought for that referral back to a rheumy and I would stress a rheumy who is experienced in autoimmune diseases. I don't know where you are but maybe you could ask for some recommendations here in the find a doctor section.

bye for now,

10,208 Posts
Hi Eve,

Welcome back.

You definitely should be seen by a rheumatologist and be retested. Too many things are going on to be ignored. If your GP isn't willing, then get another GP. If your rash is still present or flares up again take a photo to show the doctor.

I would also dump that neurologist and get a referral to a new one. You need a complete work up to find out if your symptoms are due to Lupus, MS, Antiphospholipid Antibody Syndrome, a myelopathy or something else.

Take care,

The Other Illinois Tammy
1,193 Posts
Hi and welcome back, it seems you have really been around the block so to speak and still no one is listening to you. I do know what you are saying and completely understand what you are going through. I am sorry that it is so hard for you right now and would like to help anyway that I can even it means just listening to you.
You will find that I am a firm believer in being active in your care as no one knows you body like you do. If they are not taking the time that is needed to listen to you than make them or find a new doctor that will listen and care about what is going on with you. Start calling rheumies yourself and find one that is willing to see you and call your gp and tell them you have found a rhuemy that you need a referral to. It is amazing to me what some doctors will not do to do what is their job to find out what is wrong with you. I hope that you are feeling well and doing well also.
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