Awaiting diagnosis

[hyacinth285]

Hi all I am new to this and have not yet had a diagnosis so till waiting to see rheumatology...

For the past two years i have very frequent tiredness and aches and pains not usual for a 38 year old mother of 2... been to the drs a few times with this as my mother says this is not normal the Dr had tested me for thyroid, cealiac both normal..

I had an episod of the flu last month and since it i have developed vasculitis on my lower legs tummy and elbows.. blood work was carried out and ESR was raised slightly and i had positive doubled ds DNA..

so was referred to rheumatology query lupus...

2 year history of tiredness

Aches and pains

Muscle weakness

Positive double ds DNA

Vasculitis- lower limbs, elbows

Can any advise or have had similar experience..

thanks

[Pickzie]

Hi Hyacinth. Sounds like you've been on a bit of a journey to find out what's going on but glad to hear you've been referred to Rheumatology. That's the most most important first step to get a clear diagnosis and some treatment started. That might be hydroxychloroquine. I recognise your symptoms and have had lupus and APS myself. When diagnosed I felt so much better knowing what was going on, that I wasn't imagining my symptoms and having relief from the tiredness aches and pains with proper treatment. I hope you get your appointment soon and look forward to hearing how you got on. Lots of friends here who understand how you feel so keep posting- we are thinking of you xx

[Barnclown]

Hello hyacinth & welcome

Am very glad you found this wonderful forum...it's helped me enormously through the past 6 years of the diagnostic & treatment process and I'm sure you'll find the friendship, support and quality info sharing helps you too

I too have a collection of other diagnoses overlapping with my version of lupus, and small vessel vasculitis is one of these diagnoses. It's typical for immune dysfunction & connective tissue disorder patients to have these collections...and thus is one reason why the diagnostic & treatment process can take time

If you haven't already, do spend some time on the Lupus UK website...there is a great range of info leaflets you download and lots more...including the Lupus UK local support group listing

Here is a link:

lupusuk.org.uk

If you'd like links to appointment preparation checklists & guides I can give you a couple....these have proven very popular here...so, just let me know 🤗

Take care & please let us know how you get on

🍀🍀🍀🍀 coco

[Paul_Howard Partner LUPUS UK]

Hi hyacinth285 ,

Welcome to the community forum. Good luck with your upcoming rheumatology consultation. If you need any tips on preparing for this appointment you may be interested in reading this blog article - lupusuk.org.uk/getting-the-...

Keep us updated with how you get on.

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[johare]

Hi, I am so glad that your GP was proactive and thorough. I agree with whats been said. Having a diagnosis is rough but puts you on a better path. Each one of us here have a different story and our symptoms differ and how they affect us. However, you will get good support on this site. My advice is that you cannot rush either your diagnosis or a treatment plan that works, it takes time. Pace yourself, only do what needs to be done and don't expect too much of yourself at the moment. Keep us posted.

[Shaysuekirk]

It takes a while to get your head around everything. I've had my diagnosis for over a year and I'm still learning about the disease. Just remember on bad days that they are just bad days and they will pass. It can be so frustrating, but going to the rheumy is an excellent first step.