Ronan Kavanagh by any chance?
I do think that St.Vincent's would be a good idea. And excellent idea. They have a big rheum department, headed by a world expert in PsA.
Yeah that’s him.
He writes a very cool blog and his website is great. But I'd be heading in the direction of St. Vincent's and Dr. Fitzgerald.
Thanks for that I think that’s what I’ll be doing
It's all a hard slog & you think it'll never end. I got diagnosed relatively quickly .... once it all hit the fan anyway, by an excellent locum. Then the new permanent rheumy decided I had RA, then PsA, then RA, then OA, then 'who cares?' That's when everything got complicated. It took a while to sort out but it was so worth it.
Irishchick said:
Thanks for that I think that's what I'll be doing
Just so that you know that you aren't alone, Irishchick, here's a thread you might like.
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/sagas-of-self-diagnosis
Thanks for that I'll go have a read. I haven't heard anything from Galway yet.
Seenie said:
Just so that you know that you aren't alone, Irishchick, here's a thread you might like.
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/sagas-of-s...
Your story sounds exactly like me. I just hope it doesn't take me as long as you to convince them
I didn't even TRY to convince them. I took the view that if the doc wasn't worried, I wasn't going to fret either. She, after all, is the doc and I'm not. I had a sense that something was wrong, but became convinced that it was all things that were my own fault. I needed to eat better, lose weight, exercise more, stop driving myself so hard, etc. etc. And then the damage was discovered. That's when I went pro-active. But the damage was already done.
This is why I have become a bit of an evangelist for accurate diagnoses and prompt and aggressive treatment. My life today would be different if I'd had that. I don't know if you have PsA, Irishchick, but if I were you, I would want to be absolutely sure that I didn't. If Dr. Fitzgerald says you don't have PsA, I would believe it.
If you do have PsA, there are now a lot of treatment options that will protect you from life-altering damage. We have thousands of members here, and a very large number of them rarely come here, probably because they' are under the care of good doctors who know this disease, and know how to control it. And the members are busy living their lives.
We're glad you found us, Irishchick, and happy to help. Keep us in the loop and your story unfolds!
I also think that rheumatology has moved on considerably re. PsA in the past few years. I've not got hard evidence, but I joined a UK-based RA site in 2012, thinking that was what I had. And I pop back from time to time, they allow PsA sufferers to contribute. There are so many with PsA there now ... but in 2012 there was just me & one other to my knowledge, Plus loads allegedly with RA who sounded as if they had PsA to me.
And back then PsA did not seem to be on my GP's radar. But now, although I see a different locum GP at every appointment, they take quite a pride in knowing a bit about it. There are still pockets of resistance I think. And until you find your way out of them, you feel like you're in the wilderness.
I got a letter from the Galway clinic this morning. As predicted because there wasnt much on the ultrasound I've been slapped with a fibro diagnosis. I'm still no further on
I to not to let it get me down but it's really upsetting. Now even my parents are telling me to "just accept" that that's what I have. I try to tell them that I can't just accept what I don't think I have.
Swollen DIP joints and toes, rashes and flaky skin, yellow nails, Achilles tendon and SI pain just don't scream fibro to me.
I just want to second everything you say. Going by what you've said and the pictures, I'd feel exactly the same. I'd probably be bawling my eyes out by now.
Sometimes the strange things that happen when you're seeking a firm diagnosis and effective treatment beggar belief. I've had some surreal experiences .... I can't think of a better word.
You have to keep your self-belief. It all comes down to that final sentence of yours. Your parents want this over and done with, for your sake .... of course they do. You might thank them for that goodwill but then push on.
I know you have the Dublin clinic in mind and I'm sure you know more about it than I do, it sounds good to me so far. Another option though is the Bath Royal National Hospital for Rheumatic Diseases. There is a doctor there who has a really excellent reputation for her expertise with PsA. I do not know how any subsequent treatment would be arranged, but I think that if you have PsA then a trip to Bath would confirm it and also shed a lot of light on exactly how it is affecting you.
Irishchick said:
I got a letter from the Galway clinic this morning. As predicted because there wasnt much on the ultrasound I've been slapped with a fibro diagnosis. I'm still no further on
I to not to let it get me down but it's really upsetting. Now even my parents are telling me to "just accept" that that's what I have. I try to tell them that I can't just accept what I don't think I have.
Swollen DIP joints and toes, rashes and flaky skin, yellow nails, Achilles tendon and SI pain just don't scream fibro to me.
I was actually balling my eyes out but I didn't want to say it in case I sounded dramatic. I live in Ireland so I think Bath may be out of the question :(
I have the bone scan in 2 weeks. My parents don't think that will show anything either. I just don't know anymore. I mentioned going to Dublin and the reply was "why, for them to tell you the same thing".
I'm starting to feel like a hypochondriac.
I have read a great many posts here, read about many different experiences, I have PsA myself and I'm a bit of a cynic etc. etc. and I just cannot see you as a hypochondriac. I know you are in Ireland, but there must surely be some interplay between the two health systems? You can surely go wherever you want to as well. Is a private consultation a possibility? It really is not that far when you've already travelled such a long way going round in circles.
Irishchick said:
I was actually balling my eyes out but I didn't want to say it in case I sounded dramatic. I live in Ireland so I think Bath may be out of the question :(
I have the bone scan in 2 weeks. My parents don't think that will show anything either. I just don't know anymore. I mentioned going to Dublin and the reply was "why, for them to tell you the same thing".
I'm starting to feel like a hypochondriac.
To be honest I just couldn't afford it. I don't have health insurance and I've already spent thousands. My savings are almost gone.
I also just wanted to show you these that pop up around my face and lips. I'm not sure what they are or if they relate
Okay, I hear you on that. And I don't want to push you too much in the circumstances but for when the dust settles: I phoned the Bath Hospital. Patients from EU can have a private consultation with Dr E Korendowych at the BMI Bath clinic (RNHRD don't do private rheumatology) with their GP's referral. It was encouraging to hear admin staff with such an understanding attitude. I spoke to another consultant's secretary whose view was that one private consultation can be enough to move a patient forward. I'm messaging details to you.
I don't know what the marks on your face are I'm afraid.
You hang on in there. You will get this sorted.
Irishchick said:
To be honest I just couldn't afford it. I don't have health insurance and I've already spent thousands. My savings are almost gone.
Thanks for the info I appreciate it
Irishchick, I know this is a crushing blow for you, and I wish I could reach out and give you a hug. But the game is not over yet. Nobody wants a PsA diagnosis, but you have to be confident that it has been ruled out. Let's cut to the chase here. What you really need is a diagnosis in which you have confidence, so now you have to put your sights on that. If I were you (and I'm not, lucky you ;-) I would make a plan that looked something like this:
1. Call Dr. Fitzgerald's office (today, if possible) and find out how to get a consult with him. You will need only one, but it will take a while to get it, so start on this right away. Get this ball rolling.
2. Get a referral to a dermatologist. Aside from anything else, I'd want an expert opinion on those facial sores. That will take time too, so start now. If your GP includes a mention in his referral of your family members with psoriasis, and your concern about PsA, it may go faster.
3. In the meanwhile, take pictures of everything questionable such as sausage toes and nail problems.
The hip arthroscoping is in the works, so that is good. Ideally, you will end up seeing Dr. Fitzgerald with MRIs, hip studies and pictures in hand. Dr. Fitzgerald is one of the top ten PsA researchers in the world and if he says "I do think you have fibromyalgia", I think that you can safely take a pain pill and relax.
Please remember that doctors are human and they can get it wrong. But you are going to be the one who has to live in your body. You need to feel confident in your diagnosis, and you don't yet. As you know, I was blown off for at least fifteen years. Then a rheumatologist diagnosed me with PsA told me that my disease was mild. When my hips suddenly "went" and I was worried sick that my PsA was worse than mild, my GP went all aggressive and admonished me "You need to stop worrying so much." I was in a place like you are now: I bawled, but then I got angry. I needed a diagnosis I trusted. A stern moderator here told me to get my butt to the top PsA docs in Canada. I did. Those doctors (colleagues of Dr. Fitzgerald, I might add) confirmed what my instincts had been telling me: I had severe disease and a lot of damage. Not good news, but it was a huge relief. I relaxed and accepted their advice. Life is, again, good. And so it will be for you.
I will ask my GP about a referral to him. I'll have to wait a while though as I'm totally broke now.
Thanks for all the support.