LUPUS

[SUSANCAROLGILBERT]

I have a huge list of typical LUPUS but saw a specialist rheumatologist who just sent me away and take 2 aspirin

The doctors did blood tests and said they thought it was a FALSE POSITIVE

I have had so many aches and pains in hands and neck and spine for so many years I did not even think about mentioning them

I told them about my lack of temperature control and light sensitivity and cold hands and feet

Total Exhaustion even after sleep and depression

My life is miserable and lonely being unable to join in anywhere that has heat on and in the summer I am locked indoor our of the sun and heat which makes me so ill

but I am not getting any help or diagnosis from my doctors

Steroids seemed to help me a lot when I had a chest virus recently

but they do not want to prescribe me any more even a low dose

I am always getting chest infections and bugs and feel so low and tired all the time

[StriatedCaracara]

It can be a challenge.My local NHS turned me away and I had to go elsewhere for diagnosis.

My GP said he would refer anywhere in the UK he knew I needed help.

My ANA was strong and positive but other bloods not sufficient to meet the 2019 SLE classification criteria intended for research but often it seems being applied to determine caseload.

The diagnosis I now have is Lupus spectrum - Undifferentiated Connective Tissue Disorder. The issue then is finding local NHS hospitals that choose to diagnose and treat Lupus like UCTD. It should not be assumed it is always milder than SLE.

I'm linking to a post with new paper which says mature onset SLE is underdiagnosed. It also describes how symptoms can be different and prognosis actually worse. I intend to print the papers off so have them to hand for appointments.

healthunlocked.com/lupusuk/...

[SUSANCAROLGILBERT in reply to StriatedCaracara]

thank you so much for that info ,I have been feeling so isolated and tired and depressed but ignored

[StriatedCaracara in reply to SUSANCAROLGILBERT]

One feature of my UCTD is autonomic dysfunction.

healthunlocked.com/lupusuk/...

I have not medical insurance saw a consultant privately.

I emailed the London Lupus Centre at London Bridge Hospital and asked for advice, giving them basic details (including blood results) and seeing if any of the specialists might help. I said I wanted try Hydroxychloroquine to see if it got rid of my symptoms.

They replied and I followed this up with a phone call where I asked more questions.

healthunlocked.com/lupusuk/...

I would use this method always now, as I never again wish to treated like I was by the local NHS Hospital Trust. It was an appauling experience the way I was spoken too and even I knew that what they said was wrong in terms of what is known of the disease. So assume some just say anything, whether or not it is true, to discharge.

I believe in Manchester there is a hospital with an interest in UCTD / the 'broader spectrum'

So they might be worth contacting

Sometimes some appointments, if you are a patient elsewhere, can be done remotely on the computer but for any diagnosis to be made there needs to be a face to face asap.

Relatives have helped me travel for face-to-face.

In a developed country like this you would expect there to be good specialists everywhere, as this is not a condition that makes travelling easy, especially if people are older.

Unfortunately many find it is not that local.

Once one has found a reliable place / consultant, just need to work out a plan. It can come together.

[StriatedCaracara]

My ANA was 1:320 speckled which is strong but got me nowhere with local rheumatologist.

Seeing if hydroxychloroquine helps is an important step. Finding somewhere / someone prepared to try this is key.

In cases of SLE it stops symptoms and helps to prevent organ damage.

healthunlocked.com/lupusuk/...

[StriatedCaracara]

Have you had covid?

Lack of temperature control can be part of autonomic dysfunction.

Some people have found that autonomic dysfunction started or became worse following covid infection - so in other words, it could be part of long covid.

You do mention you have had symptoms a long time so I assume this is not the case.

But if you have had covid, it might have contributed and increased autoimmunity.

Just including a link to another post which is about this.

healthunlocked.com/lupusuk/...

[Jianna35]

Have you had your D3 level tested? First thing I did was read a lot of research papers. If you can't get out in the sun I would take D3 and make sure my other co factors were available for it to be utilised. Diet plays a huge part in all autoimmune disorders.

[KayHimm]

Go to the Dysautonomia International sight. If your symptoms sound familiar, you should discuss a referral to a specialist in autonomic neuropathy.

This can be hard to diagnose but debilitating. You sound a lot like me when I was at my peak with Dysautonomia and pretty much house bound in the summer. You really need to get diagnosed if this is what you have. There are life style modifications that help and also medications.

Do you get light-headed when you stand?

Kay