Update from first rheumy appointment

[Arcus13]

I first posted to this group a couple of months ago when my GP referred me to my local rheumatology department. I has had a sudden on set of the usual type symptoms .... joint pain, fatigue, photosensitivity, hair-loss and on/off malar type rash. These were initially put down to viral arthritis due to the sudden onset with was accompanied by hive type rash.

Anyway my appointment today went well with regards to my ANA had come back negetive, so obviously really delighted (I had been worried sick as I had an aunt with Lupus and seen the effects first hand)

However, I was seen by register and I felt all in he was interested in was in malar rash. He didn’t examine any of my joints, only bending one knee and my wrists. Didn’t check my finger joints or my feet which were causing me major problems. I certainly wasn’t xrayed or scanned. He went to speak with his consulted who came in and offered me a steroid injection and review in ten-twelve weeks.

After doing lots of reading and research about what would happen in this appointment, I do feel a bit short changed. I certainly don’t feel like I’ve been taken seriously and that they are only interested in what the blood results say. Am I just being a bit over sensitive or is this how rheumy do actually work in the real world?

[Arcus13]

I see get as much support from this group as I did from my Rheumatologist. I guess it’s because my case isn’t as interesting as some. So sorry to have intervened in your close knit community.

[Horsewhisper in reply to Arcus13]

Hello Arcus - it’s good to hear that your Rheumy appointment went well with regards to negative ANA, although you do have symptoms. Sometimes these appointments are not as thorough as we would expect and getting an explanation regarding our symptoms can see us bounced around various specialties before we get to a treatment plan and/or a diagnosis. It seems you have a good GP who referred you to Rheumatology straight away and that at your appointment you were offered a steroid injection. Rheumatic conditions can be tricky to diagnose and treat and take many months of “wait and see”. Your next appointment may provide more insight to your condition and more info about treatment. In the meantime, the stuff we are always told about, such as healthy diet and lifestyle, moderate exercise, keeping stress to a minimum etc all does help to alleviate symptoms a little, I hope info helps a bit.

[Lisalou19]

Hello Arcus13

I feel your frustration. I have sat in front of doctors with full blown symptoms and they suspected lupus or a vasculitis disease, finallly I felt like I was getting somewhere ! Then the bloods come back negative so they sat there scratching their heads.

I now have an appointment scheduled with a lupus specialist after going privately to see him. He acknowledged my negative bloods as I took the results with me, but he still highly suspects lupus just by some simple tests and examinations he did.

I have later learned that sufferers can produce a negative result.

So frustrating when your bloods don’t freely give out the information needed for a diagnosis!!!!!

[Paul_Howard Partner LUPUS UK]

Hi Arcus13 ,

I'm sorry to hear that your rheumatology consultation didn't go as well as hoped. If you are unsatisfied with your current rheumatologist's diagnosis/treatment plan then you could ask your GP to refer you to someone else for a second opinion? If you'd like to let me know what area you live in then I would be happy to provide you with information about any lupus specialists we may know nearby.