First Rhuemy Appt advice pls

[MissFG]

Hello I had thyroiditis at the beginning of year and am now hypo. Levels are good now I'm on levo but I'm still very poorly. My Endo has referred me to a Rheumotologist and I have my first appointment Thursday. Do you have any advice please? My ANA was positive and so was Myositis. But Endo says they could be false positives. My symptoms I think point to Lupus. I have chronic fatigue and also take propranolol for my tremors amongst numerous other symptoms but these are the two I'm struggling with. I have one finger which the joint is severely swollen too even orthopaedics have said something is attacking my joints. I also have bad dry eyes ears and mouth. Should I write all my symptoms down for my appointment will it help and what can I expect. I'm so sick and desperately need help now thank you x

[whisperit]

Hello MissFG,

I'm quite new to this, so you will surely get better advice from others. But here's my thoughts:

- I write down what I want to say for my own benefit. I find consultants often won't look at what I have written, but it helps me to keep on track and not to forget anything

- I ALWAYS ask my consultant to write down what he says to me. As part of this, I always ask, "If I have any problems with that, who do I call?" This can sometimes produce a nice surprise - they will say "Give my secretary a ring and I will call you back", when I would normally expect to have to go round the houses via another GP appointment etc

- I always try and get a clear plan for what is going to happen next, when, who is going to be organising it, and what to do if some new problem comes up in the meantime.

- If something is still worrying me, or doesn't seem right, i always say, "What's still worrying me is....." or, "That doesn't seem right, because..." Although I sometimes feel like I am wasting their valuable time (as if somehow I don't deserve it!) my experience has been very good so far - my Respiratory Medicine consultant has been especially helpful, and seems to like having a patient who is open and honest about being worried or uncertain, even about "silly" little things.

- don't be shy about politely chasing people to get follow-up appointments, or further referrals.

Hope things feel better soon,

X

[MissFG in reply to whisperit]

Thank you that's appreciated as I know I'll go blank once I'm in there. Consultants always seem to be so intimidating. So I need to go prepared. Do you know if they're likely to run further tests? My Endo was very thorough but it's taken 12 weeks for my referral so blood tests might be different now? X

[whisperit in reply to MissFG]

Luckily (?), I am older than most of my consultants now, so they don't seem quite so intimidating! I try to remind myself that this is MY appointment, not theirs, so I don't have to leave until I am happy! Re further tests etc, I will have to leave that to other people, as I am so new to this - I still don't know what my blood results show, or what tests are most important myself...

[Hidden in reply to whisperit]

My ANA is positive for myosotis rather than Lupus or Sjogren's. But I've just been rediagnosed (previous diagnosis RA) with primary Sjogren's. This is relatively rare (half a million on the UK) and almost invariably overlaps with thyroid probs. Worth researching and asking rheumy about possibly?

[MissFG in reply to Hidden]

Thank you that's helped. I've researched what I can but its all pretty confusing and a lot of symptoms do seem to overlap. I would just feel better with a diagnosis and possible treatment. My main worry is the fatigue & muscle / joint pain as I'm 42 and struggle up just one flight of stairs

[Hidden in reply to MissFG]

Maybe take a look at a post from me yesterday with little Italian film attached about SJS. But myosotis also a possible - all these diseases can share fatigue and muscle/ joint pain. Just try not to fret - horrible being undiagnosed I know but it sounds like you won't be for too much longer. X