Long wait is finally over

[lisa___s]

Today’s the day I’ve been waiting for months.

My rheumatologist appointment after receiving the letter stating my Ana test came back strongly positive with an ANA of 1:640 with a homogeneous pattern.

Firstly I know I’ll be asking what the hell that means?!?? Cause I haven’t a clue.

But what am I supposed to expect from the appointment.

I’ve been quite unwell since I last saw them in February, it feels like what ever my health issues are it’s stepped up to a whole new level.

I’ve had to make a lot of life changes to fit around this illness.

So do I go in with a list of new symptoms?

Please help, any advice welcome 🙏

I just don’t want to walk out more clueless than before I went in and I want to know he or she knows everything they need to.

Xx

[CarolMcl]

Hi Lisa

I would strongly recommend that you write a list before your appointment as it will be a cert that you will forget something. Put everything down, even it it seems trivial as it will probably be part of the big picture. As well as a list of symptoms also have a list of questions. From some of the posts here it seems that a lot of people have very long waiting times to see their rheumatologist and then they feel the time is rushed. I'm very fortunate that my rheumatologist arranges frequent appointments as well as an emergency line if needed. Make sure you don't feel rushed, this is your allocated time and most importantly your health so get all your questions answered. Hope all goes well x

[lisa___s in reply to CarolMcl]

Thank you CarolMcl for your reply.

I’ve just done a list of symptoms, just struggling with questions x

[CarolMcl in reply to lisa___s]

Ask to explain blood results, if he's thinking of medication, what type of medication, what are the pros and cons, how long before you see results, do they have a nurse specialist phone line, how often will you be seen, what you may expect that may have an impact on your daily life, do you need to see any other specialist, for example, do you have chest complaints. Hope this helps you x

[whisperit]

Hello lisa_s,

Your positive ANA is fairly non-specific. It just means that your body is produced antibodies against itself. This suggests that there is some sort of systemic auto-immune process going on, but it is not enough on its own to give a specific diagnosis.

Some ideas for questions:

- what diagnosis do you think fits with my symptoms?

- does this explain symptom X? (whichever symptoms concern you most)

- what options are there for treatment?

- what can I do to help myself (other than take the meds)?

- what is the plan for managing my condition from now on?

- how will my condition be monitored?

- what should I do if I think I am getting worse?

I'm sure you can come up with more! Hope all goes well x

[lisa___s in reply to whisperit]

Thanks whisperit,

In the waiting room now 😬

Feeling anxious but I am now clear as to what I want from this appointment.

Thanks for you advice and help both of you,

I’ll updated you later xx

[abt84]

How did it all go? And we’re the suggestions above helpful? Did you feel you had time to ask everything?

(I had a letter through for my first rheumatologist appointment yesterday and have managed to schedule a cancellation for next week so was going to be posting the same question you have!)

[lisa___s in reply to abt84]

I’ve written a new post on the main wall explaining abt84, but yes everyone’s advice was so helpful and reassuring.

Good luck for your appointment, how are you feeling about it? Xx

[leslieliesel]

My ANA was exactly what yours is...also homogeneous pattern...

Do you get Rashes??

[lisa___s in reply to leslieliesel]

Just across my face and blotchy burning patches that the consultant diagnosed as erythromelalgia yesterday, luckily it showed itself as I was in his office xx

[leslieliesel in reply to lisa___s]

Oh..I wish they did a biopsy...that helped with my DX....some ashes may be obvious, but not all...Mine was called 3 different things before I finally asked for a biopsy