Results are in - that was quick!

littleelf

I have just had a phone consultation with my GP. My blood results came back from Rheumy already. I don't know where to begin ... I'm dumbfounded. In the space of 9 months I've gone from feeling healthy to ... erm, to ... ok at the moment.

Confirmed - Autoimmune Tissue Disease: does anyone know what I can expect from this? I can't seem to find a lot on it. I have been caught early, so that's apparently good news. The GP says that they're very interested in this one and will talk to me about it at my next appointment in 3 months time.

Confirmed - A wee touch of Lupus: Now I know why those spots on my nose won't go away! Sometimes it spreads to my face and body.

Pre-confirmed - OA/Scoliosis: pain is much better since I stopped working in the school kitchen. I'm just a plain ol' classroom assistant now ^_^

Re-checking at my next consultation for RA again. Consultant isn't so sure it is 'premature ageing' in my fingers. I honestly don't think he believed me at the first appointment.

One half of me is freaking out and the other is feeling relief. At least I have some questions for the consultant next time and a name for what ails me.

dreamdaisy

It's a shock in how quickly things can change, yes? At least it's confirmed that you have auto-immune issues so it's good that you are in the system. I don't know a great deal about Lupus but I do know that some on here arrived thinking they had RA and then found it was Lupus - for someone else it was Lymes Disease so she got busy telling the rest of us that was what we had.

Your wording of auto-immune tissue disease is a new one on me, I wonder if it's a reworking of what I was first told i.e. unspecified auto-immune inflammatory arthritis. As you know there are the sero-negative and positive forms but all kinds involve inflamed tissues of one kind or another. Your three month appointment - is that with the rheumatologist? I wonder why the delay, if they find you interesting I would hope they would recall you before then. I'm pleased the OA and scoliosis is easing, changing what we do and cutting back on the amount we do is often beneficial.

Be kind to yourself over the next few weeks, don't overdo things, rest as much as you can and I hope you soon begin to feel better in yourself. DD

littleelf

Telling everyone that they have Lymes Disease - oh dear. I think the confusion may be that many of these auto-immune issues have very similar (but not the same) symptoms.

I have no idea about the wording of autoimmune tissue disease. The Rheumy mumbled something about it at my last appointment and the GP said that's what it is. I've searched the net (as you do) and they list it as autoimmune connective tissue disease. I'll talk to the consultant when I see him next as I see that there are loads of different kinds. It's never simple, is it?

The Rheumy said that he's 'not concerned' about it yet, hence the appointment in three months (he told me as much at my last appointment too). He said if the marker (not sure what to call it) was at 8, he'd worry. I'm at 2.85. No idea what that means, but thinking it's a good thing.

Thank you for the continued support on here DD and everyone else - I'm guessing you all know how valuable this forum is. I really would drive my family mad with it all ... I guess I'll just have to drive you lot mad instead!

stickywicket

It must all be a bit bewildering and scary but, as you recognise, it's better named and dealt with than ignored and left to its own nasty devices.

Like DD, 'autoimmune tissue disease' is a new one on me. I don't google for myself and advise others not to but I had a go anyway and my guess is they mean you have some sort of autoimmune arthritis but don't know which though, if they have identified lupus and are keeping an open mind, they may feel there is more to it than just the lupus. As the meds are broadly the same this doesn't matter much to you. (I'm sorry but I've forgotten which, if any, meds you are taking.)

Having confirmed the OA / scoliosis, they will almost certainly leave your GP to deal with this element.

Good luck with it all. You might learn more in three months but don't bank on it. These autoimmune diseases are sneaky.

dreamdaisy

Right, the 'connective' makes all the difference but, seeing it from the patients' perspective, I am slightly disappointed in the lack of urgency. As I've said before the doctors etc. live with the theory whereas we are confronting the reality. I don't know what your figures mean (or to what they refer) either, mine were always very clear that something was going wrong!

I think it true to say that nobody finds this topic as 'interesting' as those who live with it. Family and friends need to grasp the basics and the impact on us (tiredness, pain, the fact that because we do something one day is no guarantee that we can do it another, that we cannot plan months in advance as to how we will be on a certain day etc. etc. etc. ) and that's it. Even so they can still get it spectacularly wrong which can be a source of great frustration; The Spouse recently erred so I passed over a copy of The Spoon Theory, to refresh his memory. 'I've already read that. ' was the waspish reply. 'Yup, and forgotten it.' was my response. At least you are talking to the initiated on here so keep in touch, OK?

I hope things remain as stable as possible over the next twelve weeks but if not don't hesitate to contact rheumatology. DD

littleelf

I guess I can ask more questions in three months and hope, until then, that the symptoms stay put.

Thank you for your support guys.

Jacqui x

Gwynedd

Hi littleelf,
You must be feeling a big jumble of feelings, you've had a diagnosis which has to be a positive thing.
I hope your next appointment will answer more of your questions. Your Rheumy department sounds really efficient, it must be a huge relief to know their investigating throughly.

littleelf

Hi Gwynedd, how are you getting on? When do you go back for your next appointment? Have any more of your blood results come back or x-rays?

I have to admit that part of me is scared: about the outcome, what does it all mean, what will they do? But I'm also happy that I'm not imagining all of this.

I'm just trying to get on with things and accept that some days are going to be worse than others.

Hope you are feeling well though.

Jacqui x

barbara12

Hello Jacqui
Good that you have the results back,like you say its a mixture of relief and a bit of panic...its certainly a mixed bag, sorry I cant offer any advice but please keep us updated...you must have many more question now to ask them...so make another list...

littleelf

Thanks so much Barbara and will do. It's a long time away, but I'm sure it'll go by quickly.

Gwynedd

Hi Jacqui,
All I've received is a letter in the post with another appointment to see the rheumatologist in August. So I'm presuming that the Xrays and bloods were ok ( I hope) :?
My pain and stiffness has improved on Naproxen, I did stop taking it last wk to experiment, unfortunately my symptoms came back full force
But at least I know that their suspicion of a sero negative arthritis condition is probably correct and I'm in the right place.
I completely understand your fears,it can be such a big adjustment , I've started getting my head around all this and I've forced myself to stop obsessing about my illness, it was becoming unhealthy for me. How is your pain management? What meds are you on?
Take care
Take care

littleelf

It's so funny, I tried the same thing with the ibuprofen too. I take it three times daily. And omeprazole for tummy protection. It keeps my inflammation rate stable, but only takes the edge off the pain when it flares up. The consultant didn't talk about any other medication yet. Too soon I guess.

Pleased that your medication is controlling your symptoms though. Like you say, at least we are in the system now and getting care.

I take each day as it comes. Some good, some bad. Just looking forward to the schools breaking up and then I'm free for six whole weeks

You take care too x

Gwynedd

I'm off for the hols after this week, I teach in a college.
I've been hanging on by my finger nails, counting the days. we are lucky in that we get a nice long holiday.
I can't wait!!

littleelf

Best job eva!! Lol. Have a nice time

stickywicket

littleelf and Gwynedd

I think you're both doing a great job of coping with all this. It's by no means easy and you are both dealing with the newness, the changes and uncertainties in addition to the arthritis itself. I'm sure you'll both cope whatever life throws at you.

dreamdaisy

I agree with Sticky, you two have had a lot to deal with in the past few weeks, being diagnosed with any form of auto-immune is a shock, then factor in the trial-and-error with the meds well, it's not easy. The other areas of life rumble on regardless such as work, family, social activity all clamouring for an attention which we may not feel like giving.

Both of you are in the system now and that has to be a good thing. I have seen for myself that the earlier the treatments are given the better the outcome - yes there are things that we can do for ourselves because it isn't all down to the docs and the drugs, but for the likes of us being in the system is a good thing. DD

littleelf

What a lovely thing to say Sticky and DD. Thank you. You both have made this so much easier, believe me.

For my part, I just turned a corner a few days ago. You can either sit at home obsessing, or go to the beach and have a paddle ... I've been paddling twice this week

I'm not denying I'm a little scared though. Just talking each day as it comes. I'll probably be asking loads of questions again in three months time :S

Plus it helps that my course is finished and school breaks up, for me, in two weeks times (kids finish next week). Yey!!

dreamdaisy

It's a steep learning curve and we're here to push you forward, prop you up and dust you down should you fall back. It's what we do because we know how bewildering, frightening and scary this malarkey can be. You're not alone, OK? DD

littleelf

Gwynedd

Thank you both so much for all your support. When I first started on this journey this forum was a lifeline. It's been a steep learning curve but like littleelf I've decided to go to the beach. For the moment I'm controlling my pain and symptoms so I see myself as one of the lucky ones.
DD and sticky your selflessness inspirational.
Thanks to you guys I didn't totally freak out
Xxx

stickywicket

Hey, come on, you two. You'll have my eyes leaking if you go on like that

You're very welcome. Arthritis is tough and we all need all the help we can get.

littleelf

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