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New to this board, sorry if it's long

354 Views 11 Replies 6 Participants Last post by  lazylegs
Hi everyone I'm new, and not really sure what to do, but here goes.
I've been having strange symptoms since my daughter was born 8 years ago, but never saw a doctor until 18months ago when I lost the sight in my left didn't go for long thankfully. Then it was the servere headaches and I kept falling over, oh and found thinking difficult and speaking. High BP, now on tablets for. At first my GP said it's migraine, then when it happened again a few months later and it lasted for longer he referred me to Neuro, he said he was concerned about MS. Anyway, Neuro wasn't very nice and made me feel like it was all in my head. Had VEP & Brain MRI. There was 2 lesions on the brain (inconculsive) and VEP was normal. ESR was raised and GGT abnormal. My GP was unhappy and wanted me to have a second opinion, this one thought fibromylgia. In may I started with the swollen painful joints, struggling to walk extra and flu-like symptoms, the fatigue was terrible and everything has stayed with me. Oh I get freezing cold feet that look grey and I burn really hot on parts of my body, face flushed and other parts freezing. GP tested for RF and it was slightly positive, so off to the Rheumy was the next stage.

Saw Rheumy in Dec and he was pretty sure RA on examination and then sent me for tests. Then a week ago I was in terrible pain with chest and ribs, made worse by breathing. GP sent me to hospital as concerned about a blood clot. GP said your Rheumy is thinking that you may have Lupus even though the test was negative, I was like shocked, that was the first time I had heard of Lupus. Thankfully at the hospital they ruled out a blood clot and said it's inflammation of the chest walls.

I don't get a rash on my face and I'm not sun sensitive, so surely I can't have Lupus can I? I do get a rash on my hands and forearms, sometimes on my chest, but it never lasts long. I do suffer alot with dry eyes, mouth i guess is dry alot, I have a metallic taste in it most of the time.

Can you be diagnosed with Lupus even with negative tests? Sorry to go on, it's just GP was convinced MS would be diagnosed one day, then I got used to the fact of RA.

Thanks for reading
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Yes, you can have sero negative Lupus. I did for many years before it showed in the blood. Also with many people the early tests are not spectacular.
The inflammation in the chest may well have been costochondritis, (Costo) - if you search this site you should come up with posts about it, see if it sounds like you.
It is pretty late here, talk to you more later. Welcome here!
x lola
Shame for you

Hi Happydays,

Lola is right. Lots of people don't test positive for Lupus, but have it. Sometimes the tests come back positive later in the course of the disease. I also have rashes that come and go but are gone now with Anti Rheumatic drugs. You don't have to be sun sensitive.

Tak care and good luck
Hey Happydays. like the name, bet you wish you were hving happy days lol. I wouldnt like to say what the hecks going on, but something is,

i can fall over, get very dizzy, must admit itsmuch better now, have they tested you or huges syndrome? just another htought

you know it can be a long road, nothing easy in this lot
wishing you luck, keep us informed
Lin xxxx
It is a small minority who will be diagnosed with lupus without positive bloodtest results (1-5%) but usually they will have some other positive test result like a skin biopsy positive for lupus. It is pretty uncommon to get the dx without any positive test results, but it does happen & in some cases it clearly should be diagnosed.

A few years before my lupus diagnosis, I would get rashes on my forearms with the first few sun exposures. It also lasted only a brief period of time (usually less than 1 day). I thought nothing of it at the time, only later did it factor into my diagnosis. So you may very well be sun sensitive after all.

MRI test results similar to yours can occur with lupus being the cause, so I'm glad they are considering the whole of your symptoms and medical history and being sure to consider lupus as a cause for your illness. Hopefully you will get a final diagnosis soon and get started on some treatment that will really help you.
Hi Happydays,

Initially doctors thought I might have MS. After extensive testing it turned out to be Lupus.

Many diseases share symptoms so getting a diagnosis can be difficult. It may just take time for something key to emerge to say which disease it is.

You mentioned having an MRI. Did you also have a lumbar puncture to rule out MS?

I hope you get some answers soon.

Take care,
Hello Again Happy Days, I may be telling you something you already know if so please forgive me. Sun sensitivity in Lupus does not just mean rashes, it can cause a general worsening of your symptoms, feeling sick , legs wobbly, **** flu. Some people, and I was always one, are not even out in the sun long enough to tan, they get ill long before that. So it is worth thinking if the sun makes any of your symptoms worse.
It is possible, if you have an enlightened Consultant, to be diagnosed with Lupus like illness and started on treatment to help your symptoms even before positive bloods. In my case I was clearly so ill, despite negative bloods ,that diagnosis was relatively quick once I got to a decent Consultant.
Hope this helps.
x Lola
Hi, thanks for all your replies. No the only tests I had at Neuro were MRI of the brain, VEP and bloods. I asked for an MRI of the spine and the Neuro just said no point in having MRI spine or lumbar. I've got another appointment to see Neuro in Feb, so whether he'll do anymore tests I have no idea.

How was MS ruled out for you lazylegs?
Hi lola, thanks for your reply. The only thing about the sun that I can say is that I used to love it and went a lovely golden colour, although these past few years I can't seem to stand it for long now, and I burnt this year....I don't think I've ever burnt.

Do you have any problems with your feet being cold all the time and looking a horrible pale grey colour?

Which bloods were positive & negative when you got diagnosed? I have no idea what bloods I've had done this time.

Sorry for all the questions, thanks.
I eventually tested positive for APS, at about 3 times the upper limit, and my ANA tests became positive at the same time. I did have a history very suggestive of Lupus and APS which helped. I don't suffer too much with my circulation, but my daughter who is 17 and has lupus has feet and hands like a corpse.
Ask us all as many questions as you want.
x Lola
Thanks Lola. I think once I know what it is for sure I'll be able to deal with it and move on, feel a little stuck in a rut right now. That describes my feet perfectly. Thanks
When I was tested I had MRI's of the brain, cervical and lumbar spines. At the time all were negative for lesions. My reflexes were not brisk, I showed no Babinski reflex, and had no eye involvement. I did have weakness, tingling and numbness, gait disturbances, vertigo and headaches.

Eventually I did develop white matter lesions in the brain. The were not however in the Dawson finger formation as is found in MS. After one extreme flare the MRI's were repeated and I was diagnosed with Transverse Myelits. MS was once again a possibility. The lumbar puncture proved negative.

My hands and feet are always cold and can be discolored. I have been diagnosed with Raynaud's along with many on the site.

The following site gives the list of blood tests used to diagnose and monitor lupus.

I hope this helps.

Take care,
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