I had prepared well, thanks to reading such a lot on here, and took a list of symptoms and concerns. He asked if I would mind him asking questions first, and then if there was anything he had missed or I had on my list to add them.
I am so pleased I chose a rheumy who knew about Sjogrens. He was very thorough in his questioning and the only thing he didn't ask about was IBS, which I have so told him.
I now have to wait 6 weeks to see him again, as he wants to do a huge amount of blood tests. I saw the rheumy privately, but because my level of insurance is low, he will write to my doctor to do the blood tests as that won't cost anything.
The worrying thing for me was he noticed a pattern of mottling on my arms. He said it was indicative of liver diverticulitis. I haven't heard of that before, and nothing came up on google. Is this similar to primary biliary (oh gosh I can't remember the name) but something primary b.... c.... ?
So I won't know any more until I get the blood tests done by the GP, who has to send the results to the rheumy. Rheumy said to make another appointment to see him in 6 weeks so that he has got all the test results. He said that from talking to me he was not sure if I had SJS primary or secondary to something else.
I am relieved to speak to someone who took me seriously, but now I am scared about the liver thing as I don't know much about that. My husband came with me and he was very upset after the appointment, as he now realises I am ill and it scared him. xx
Jaygee,
Your husband will have a processing period just like you.
Its great news that you have a good Rhuemy.
I hope you try not to worry about the liver thing. It is very important that you don't stress, as this can aggravate health issues. This may be an issue that never may be.
Keep us posted on results.
blessings kimbo
Hi Jaygee,
Congrats on getting a good rheumy! Heck, that is half the battle!
When you mentioned mottling on your arms, did you mean Livedo Reticulitis? If you did, I have that too. I don't know what that means, but the rheumy saw that too and he hasn't said anything about it either. Hummm, interesting. Do you also have Reynaud's?
I'm glad that your hubby sees that you are ill, and that it's not all in your head.
Take care -
Patze
Hey Patze you are right!
I was hearing him wrong. Livedo reticulartis (or similar LOL!) The mottling is apparently associated with Lupus (just googled it). I thought he said something about my liver!
Hey and thank you all, once again, as I was able to take your advice, get a rheumy who knew about Sjogrens and took a list of problems with me.
Mind you, I'll have to eat my hat if all these tests come back clear!
Hi Jaygee,
Livedo Reticulitis can be associated with Lupus, APS, or it can also stand on it's own. It's tough trying to figure out what goes with what or is it something else that is just there?
It's frustrating, but I've found that the folks here have taught me so much and I'm so glad that I found this website, and they've helped me not go nuts (well at least on a couple of doctors, I'm still debating about the rheumy though ;) :D).
Hang in there and let us know what your doctor says.
Take care -
Patze
Forgot to say, he said something like he is unsure whether sjogrens is primary, and he needs to also consider lupus, raynauds and/or something to do with the livedo reticularis. He repeatedly asked me if I'd ever had a blood clot, which I haven't.
Not heard from doctor yet regarding going in for blood tests, and I am going away on holiday for a week this Saturday. It is frustrating as I want to get the tests done as soon as possible so I know what, if anything is wrong. I am finding this limbo land quite stressful.
I have also got over the shock from my appointment on Saturday. I thought he may just say I had sjogrens and that he would be testing for it. I hadn't consider I might have other things too, although I realise from reading on here that this is pretty common.
Thanks for your support. xx
Hi Jayge,
I am going through exactly the same experience as you except my rheumy doesn't appear to be a specialist in SJS and has that 'so what' attitude! Maybe I should ask my doctor to refer me to a know specialist in this field. the rhuemy made the same comment to me about primary sjogrens and or Lupus but hasn't given a definite diagnosis which is frustrating, he just mentioned "if I was to develop primary Sjogrens and maybe lupus overlap".
I have had my blood tests and I received a positive ANA (speckled) 1:640, positive SSA (Ro60) (which I think is consistent with Sjogrens) and a positive Rheumatoid Factor. Ihave another appointment on at the begining of July so will see if I can find out anymore then.
Do you mind me asking what your symptoms are?
Take care.
Hi TOB
My symptoms: tingling/loss of sensation in hands/feet, dry eyes (quadra plugged), dry mouth, raynauds white fingers, livedo reticularsis - which I don't know much about and so is worrying me, brain fog - forget what I'm saying mid-sentence, tendonitis, IBS, aches and pains, dry skin, don't sleep well, fevers and chills, extreme fatigue. Think that's it LOL! xx
Jaygee. so so glad that the liver thing ..wasen't!
You got a lot on your plate as it is lady..
Just hope this good fellow sorts you out pronto...
Hugs Dolly