Hospital appointment - rheumatologist : Got my... - LUPUS UK

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Hospital appointment - rheumatologist

Montycorgi
Montycorgi

Got my hospital appointment for the 26th of March to see a doctor in the rheumatologist department.

Don’t really know what to expect, anyone got any tips or experiences?🤷🏽‍♀️

Just want to make sure I tell them everything I should be and to know what there gonna do in the appointment?

Thanks again💞💞

8 Replies
oldestnewest

Hi Montycorgi, if you've had blood tests that point to an autoimmune disease - ANA is one that GPs can order, and if it's positive, then the lab tests for specific antibodies, some pointing to a specific autoimmune disease like lupus - then the rheumatologist will probably order more blood tests to narrow it down.

He/she should take a full history of all the symptoms you've ever had, and ask about family history, particularly of ai illnesses like Crohn's, celieac, Sjogren's, rheumatoid arthritis. Make and list and take photos of any visible symptoms you have like rashes.

He/she might order investigations like a chest x-ray or an abdominal CTscan.

Ask everything you need to know, don't let him/her raise from their chair till you're finished. I went into my first appointment completely unprepared, it was like a belly blow when I was told it looked like lupus - I had positive dsDNA - and was frightened when I was punted off for an x-ray. The rheumy didn't explain anything, and I didn't ask....but you'll do better! Be ready and be persistent...some doctors forget they're treating a patient, not just an illness!

All the best! xxx

rodders1941
rodders1941 in reply to eekt

hi, thanks for your good reply, l went to see my rheumatologist she recommended

hydroxychloroquine, which l found was not good if you have any eye complaints ,

l told her this ,she told me to come back in 10 months time and no suggestion of any other medication , l have a auto immune disease which is affecting my lungs. lm not sure what

to do . kind regards rodders

eekt
eekt in reply to rodders1941

That's an awful situation to be in, you need a new rheumatologist...I've read here you can see a top-notch specialist in London or Cambridge for around £200 to look at the whole picture, if you have the means, and then be referred back to the NHS with a proper treatment plan in place...I hope at least your lung doctor is looking after you well?

You can have a free eye test from a High Street store that's as good as any hospital now, they have those hi-tech cameras - have them checked if you've had any trouble with hydroxychloroquine and your eyes. It's supposed to be done before you start on it, then yearly. Are you still taking it?

All the best rodders! xxx

rodders1941
rodders1941 in reply to eekt

hi, thanks for your reply ,lm going to ask for another doctor, which l understand you can do , l will let yuou know how this pans out . god bless rodders

rodders1941
rodders1941 in reply to eekt

hi l forgot to tell you l refused the medication she suggested , so lm on the look out

for something to replace steroids. rodders

Montycorgi
Montycorgi in reply to eekt

Thank you so much for replying!😊

Yes my ANA tests did come back positive! So I’m guessing they will hopefully investigate with blood tests further.

I will make sure to definitely follow your advice! Thank you again for putting my mind at ease🤗

All the best💞

They should do a thorough exam with blood and urine tests and maybe an xray or scan. Write down everything that is bothering you and for how long and any medication you take including vitamins and supplements. Good luck

Great advice!

Thank you, appreciate it😊💞

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