[purplesnowflake]

Hi. Just come back from rhuemie and now I'm unsure what to do or think.
All my blood tests and mri scas came back clear so I'm officially ok.
There is nothing to indicate I ve got anything serious so why do I still feel lousy. Why do I hurt and have legs that do their own thing and hate doing simple things like walking. My rhuemie says sometimes they just do nt have the answers and it could just be that this is how I am. He's given me some more painkillers and anti sickness tablets as I keep feeling sick and lost weight.
He'll see me again in 6 months but his advice was keep active.
I'm glad it's not CNS vasculitis and my scan is clear but I would like answers.
Should I just give up searching for answers and forget doctors and just cope with things as best I can or do I make an appointment with the doctors in London? With normal scans and blood tests is it worth it? Could it be all in my head and looking for answers is making things worse.? How do you know?
Sorry this is a jumble.

 

[sam101360]

I won't say this is all in your head! Lupus is a very hard disease to DX. You know your body best, so you need to make sure someone with the proper knowledge of auto-immune diseases reviews your case (not all rhumies are).

I am a serum negative SLE, RA, etc. sufferer. My blood work for auto-immune diseases are almost always normal. I am have a rhumy who specializes in auto-immune disorders I am being treated and tested regularly.

You need to decide if the battle is worth it...you may still end up without a dx or medical recognition of your symptoms.

I am sure others will come along with betteer advise that I was able to give. God Luck - Stephanie

 

[LolaLola]

If it were me I would be off to London. (In fact I was there yesterday to top up my NHS care with a Private appt.-I feel I ask the NHS for rather a lot)

I have seen Prof. Hughes, Dr. D'Cruz and Dr. Edwards all of whom are at the London Lupus Centre and they are all excellent. My bloods and MRIs were not up to much despite being very ill when first seen, but I was given the treatment I needed.
x lola

PS I do remember how hard it is to be at the stage you are at now.

 

[Katharine]

Hi there,

I have to agree that I'd be off to London. I too am negative on bloods like ANA, anti dsdna and also have nothing sinister showing up on MRI's etc yet I do very much have a firm lupus diagnosis.

The thing is you know that you are ill and that you need help. How can that be "maybe that's just the way you are"?

Katharine

 

[lazylegs]

My first two mri's came back clean. The third on the other hand showed lesions. It may just take time for everything to present itself.

Have you seen a neurologist?

Take care,
Lazylegs

 

[Meriel]

How frustrating for you, I'd definitely get a second opinion - I can also recommend Dr D'Cruz at the London Lupus Centre.
Meriel

 

[lin]

do hope you get somewhere hun, but remember it can be a long road
hugs Lin xx

 

[Pink Pearl]

I am another who is ana negative, and in the 20 years I have been diagnosed, have NEVER had a positive ana. I am, however, positive to anti ds dna, aca, and hit more of the 11 than I skip.

One thing to remember is that a diagnosis of sle is made on meeting any 4 of the 11, with OR without lab work. So, if you are hitting those 4, then the dx is positive.

I would also keep any appt for further investigation. You are not symptom free, so despite what the other doctor said, you have cause to be tested further.

Good luck,
Sally