First appointment with Rheumatology

[Foodman500]

Hi,

Could anyone help me out

I have my first appointment with the Rheumatologist on Monday.

Are there any specific things they will ask, or that I should make sure to cover.

My GP said that it's almost certain I have SLE

My ANA results came back positive when I was pregnant and no one contacted me. After the birth of my daughter I became very unwell with lots of symptoms.

Saw gp for joint pain, which is when I discovered this result.

Since then things have progressed and I have a lot of symptoms that are difficult to manage with a young baby.

If anyone has a list of bullet points that I should cover. I'd really appreciate it.

Also anyone's advice on applying for a blue badge would also be welcome.

I am an occupational therapist myself, but need some tips.

Serious brain fog atm

A.

[NeuronerdDoaty]

Hi! I can’t think well today. Im fuzzy-minded. I just want to wish you the best and hope the appointment turns out well. Congratulations on the birth of your baby.

[Lisalou19]

I had an increase in symptoms after the delivery of my son in 2013. I had symptoms prior to having him but no where near as bad.

My current diagnosis is UCTD.

For your appointment, a time line of symptoms is useful, any photos of physical symptoms you may have.

I hope your rheumatologist is helpful. X

[Freckle1000]

Congradulations with the new Baby. 🙂

All you have to do is write down all you're symptoms and when they appeared. - Be sure to mention the positive ANA during pregnancy and how symptoms came on after giving birth. It should be strait forward - the Rheumatologist will send you off for a heap of blood tests which will determine wether you have Lupus.

[eekt]

Congratulations on baby! At my first appt, I was asked a list of seemingly random questions: 'ever had rashes, fatigue, a face rash, joint pain, fever with no infection, hair loss, mouth/nose ulcers, headaches, sun-sensitivity..' and was sent for a chest x-ray then and there, which was alarming - I hadn't heard of lupus before I was told that's what it looked like! - and a CT of my abdomen was ordered.

These tests/investigations are done to work out the best treatment plan if that's what it is.

Take someone with you, if you can, and let the rheumy know if you're planning to extend the family

All the best with baby and treatment! xxx

[Peppytea]

I’m not sure if it’s any different in different council areas, but all I did is type into my local council website blue badge application and it gave me an application to fill out - things like what your name is, how old you are, what benefits you receive if any. After that I got an email saying I needed to forward I think it was a proof of address, a picture (for the back) and proof of benefits (as my Mum has PIP) and then within about 2 weeks we received the blue badge. It was once of the easiest things I have had to deal with as a carer!

I hope this helps some my lovely, good luck with the rheumy appointment - I go to my second appointment on Monday so I’ll be thinking of you! Let us know how it goes and take care of yourself 💜🌟

[Paul_Howard Partner LUPUS UK]

Hi Foodman500 ,

Good luck with your consultation on monday. Please let us know how you get on.

We have an article on our website with lots of tips about preparing for a medical appointment which you may find helpful - lupusuk.org.uk/getting-the-...

We also have an article with information and advice about getting a diagnosis of lupus - lupusuk.org.uk/getting-diag...

[Foodman500]

Hi everyone,

thanks for the advice, tips and guidance.

It was a total non-event, left feeling very frustrated and ignored.

The Dr didn't really care about the impact symptoms are having on caring for my daughter, ie not being able to hold her, do up poppers on her clothes etc.

Nor did he want to know a lot of the information I wanted to get across.

He wont start treatment until my blood results and I have had a nerve conduction test, MRI and see him again in September.

He explained that there is a medication that would greatly improve my symptoms.

this medication takes three months to work, I go back to work (full time) in three months. so was hoping it would coincide. however he wont prescribe until I see him again in September, by which time it will have been nearly 18 months since the onset of my symptoms.

His attitude totally shifted as soon as I said I was being treated for anxiety.

He did say that he wold call when my bloods come back, so I am thinking of pushing for medication then.

just more waiting and being disbelieved.

really fed up.

A