For Attention & Others re Lupus & Proper Diagnosis

[Guest guest]

Hello & Others,

Am sending this as I see from earlier message you are interested in Lupus &

testing. My name is JayneH ,I joined this group a few months ago but have only

posted once.

Hope I'm doing this correctly, not au fait with posting !

I have just been diagnosed with Sjoegren's (?) Syndrome and with

Anti Phospholid Syndrome (also known as Sticky Blood / Syndrome).

Sjoegren's is a close cousin to Lupus. Won't go into my story now, very briefly:

had ME diagnosis, pretty ill for 15 yrs, unable to work. Also have thyroid &

adrenal problems, mostly untreated. I always knew I did not have ME & it has

been a long & painful road to fight for a better diagnosis.

I was diagnosed two weeks ago at the London Lupus Centre & cannot recommend it

highly enough. Like most of us I have seen many ignorant doctors but cannot

praise this person highly enough. Difficult to say more without breaking no

names protocol. He also recognises that many people with these types of

auto-immune diseases have thyroid issues.

The London Lupus Centre is private, but the charges are, comparitively,

reasonable. It cost £780 for two appts a week apart & a huge battery of tests.

There were at least 70 different blood tests. These would cost much more at

other establishments , I think it is part of the ethos that costs are kept as

" reasonable " as possible.

I do appreciate that this is still a substantial amount of money. I am not rich,

I subsist,alone, on ESA & DLA. But I have a very kind brother.

This Centre is also linked to the NHS Lupus Clinic based at St Hospital

in London, to which anyone may be referred by their GP.

I am happy to give more details if anyone wants them & would be willing to send

my tests to you , if wanted. Could people please contact me by my email

, not via the board. My poor damaged little brain can read messages but goes

weak at the knees negotiating how to respond .

It will be some time before I can tackle the thyroid/adrenal side of things. I

have agreed to be referred to an endocrinologist by the Lupus doctor. I am not

too hopeful about this ,my results are mostly low normal, but will let the group

know what occurs. My GP has categorically refused to refer me to Dr Skinner, so

the fight goes on!

JayneH

[Guest guest]

Hi Jayne,

Welcome – I too have Lupus and I had

Syndrome – plus Lupus in the kidney – Lupus Nephritis – I was

a very serious case but when I got the thyroid sorted out my Lupus improved by

90% and eventually went into remission. I still have to be careful I am having

a flare now but I believe Lupus is an adrenal/thyroid issue. Just a tip make

sure your teeth are all OK as any infection including the teeth used to flare

my Lupus.

I wish you good health.

Best wishes

Mandy