It feels like...

sillyswede

... judgement day...!

The day of my first Rheumy appointment has finally arrived, and I'm scared!!! Scared of not getting a diagnosis, and just as scared of getting one... :roll:

Haven't been a lot in the last few weeks, but hope you're all doing OK. The pains and aches I've been having seem to moving up my body, literally. Back, hands and shoulders can be added to list now too. I have a new kind of pain in my knees aswell, as if something has changed.

We'll see what they say. Have been waiting for this day for months, and now I wish I could just skip past it.

:?

dreamdaisy

I hope all goes well for you. Have you picked up on our tips about lists of symptoms, a list of questions and a wee sample? Don't worry about the last - you can always provide at the hospital if they do need one. I wish you all the best and I hope you can get some answers today: don't bank all your hopes on that tho, sometimes it takes longer than one would hope to find any solutions. Thinking of you, and do let us know how you get on. DD

sillyswede

Thanks DD.

Yep, have a pain diary for the last month or so (thank you all for the tips!!), and have been asked to bring a sample. Can I just ask what that is for? I'm not pregnant. Jokes aside, is that to look for infection or something?

I have realised that it's best not to expect too much, after reading everyone's posts in here. I'm not fully convinced it's ReA, just because it's got so bad in the last couple of months - it just seems very aggressive. At the same time I don't have the typical symptoms for RA either (morning stiffness etc).

Do they always go for x-rays and blood tests? I had blood tested in May but they didn't show much.

skezier

Hi Silly Swede,

A ((((( ))))) and there is nothing to be scared about. You will get some help and they will have a better idea of whats going wrong there.

What times your appointment and we will all be thinking of you. Anther ((( ))) and its really is nothing to be scared abut flower. Cris x

dreamdaisy

To be honest, I don't know why they do the wee - oh, hang on,not quite true, I was on cyclosporin and that was cleared from the body via the kidneys, so that would explain that, but for the rest of the time? I guess it's to do with the drugs we take or they just like looking at pots of urine. Medicos are a funny lot. 'Your hand hurts? Wee in this please.' Anyway, good luck. DD

sillyswede

Hi Skezier, and thank you!

My appointment is at 10, and have to be there 15 mins before. Hopefully I won't be waiting too long with being there so early...

I know I shouldn't be... But it really does feel like judgement day. I do know though that the sooner I get a diagnosis, the sooner we can start in finding treatment, so fingers crossed.

Thanks again. SS x

skezier

Hi SS,

The bloods the hospital do are more in depth so that's why they do those. Why the wee.... I have no idea except they test it for diabetes. Good luck and will be thinking of you. Cris x

tillytop

Hi Sillyswede

Just to add my good wishes too for your appt today.

Sounds as if you are really well prepared with your pain diary (and your wee sample!). If the last bloods you had were in May, I would expect them to want to do some more today and possibly some
x-rays too. It may be that you won't get a diagnosis today - they may talk to you about your symptoms and do the tests and ask to see you again for a follow up when they have your results. My view on the wee sample is that may be to check kidney function - that's what I was told when I had to take a sample in recently. I guess then they know things are as they should be, kidney wise,
for if/when you start medication.

Really good luck today - and think of it as the next step forward towards finding out what is going on and getting some proper help to manage the symptoms.

Love Tilly xxx

julie47

Good luck tillytop

Hope you are not waiting around too long

hope they give you some answers

juliepf x

dippydoodah

just adding my good luck wishes for your appointment today. its such a waiting game isnt it? as dd said earlier, it takes a long time to get a prognosis sometimes, you may not get all the answers today but at least its the start.
you dont have anything to worry about, they are there to help you. from experience, its scary waiting beforehand but once you get in the room and start the appointment you should relax a bit, i did.
hope you get some answers today, wish you all the best and offer gentle hugs x

barbara12

Hi SS
Hope it all goes well for you, and you get the answers you want.
Its always a mixture of feeling when the appointment is so important.
Good Luck
Love
Barbara xx

frogmorton

dreamdaisy wrote:

To be honest, I don't know why they do the wee - oh, hang on,not quite true, I was on cyclosporin and that was cleared from the body via the kidneys, so that would explain that, but for the rest of the time? I guess it's to do with the drugs we take or they just like looking at pots of urine. Medicos are a funny lot. 'Your hand hurts? Wee in this please.' Anyway, good luck. DD

Cant they see some crystals with 'gout' in the wee??

Probably wrong

Can I wish you - silly swede - all the very best - youa re ready for this appt and you need it.

I hope that you get your diagnosis (might have more tests though first - that can happen :roll: ) and that anything wrong can be helped.

We will be here to help you when you get back

Love

Toni x

sillyswede

Thanks all for your support. Unfortunately, this morning was complete waste of time. Had the ReA diagnosis confirmed by the consultant, but as I don't have much swelling, he basically told me to just wait for it to go away, which usually takes about a year, and go to my GP for pain meds and anti-inflammatories (made it perfectly clear to him I've tried two different ones and my stomac couldn't handle either). He had a quick glance at my pain diary, and gave it back to me. No follow-up needed. Appparently.

I'm at my wits' end right now. I can't keep going like this, and it keeps getting worse....

frogmorton

Ok

That is awful and you must feel like ****

apt with GP needs to be made for this week.

Also ask about other anti inflams COX2 type - they are way better on your stomach and will help.

I am so so sorry - will let the gang come up with other better ideas but this was me reacting quickly and off the top of my (not very clever head)

We will be here

Love

Toni xx

dreamdaisy

Oh dear. I don't know much about ReA, but he does sound very dismissive. It's OK for him, he ain't living with it. I agree with frogmorton, there are alternaives out there: ask about Celebrex, I found it the most effective anti-inflammatory and I didn't need a stomach protector with it. Were you on a stomach protector before? If not, I think you should have been to guard against just such an eventuality. I am so sorry, what a knock-back for you. DD

Rainbow77

Hi Silly swede

I really feel for you is that happened to me exactly 4 years. ReA can advance rapidly, I could only just hobble into the appointment. The rheumy nurse told me to take paracetomal, it will pass and pop down to h&b and get something to boost your immune system.

I am sorry to say, but this is the time to start your fight. I would write a letter of complaint and copy it to gp, consultant and Pals at the hospital. In it you need to explain all your symptoms, what the consultant said, the reasons why you are unhappy with his comments and what you want to happen. (i.e treatment plan, control of the pain etc)

Go and see your Gp to back up your letter. PALS will be straight in touch as they will not want a complaint to add to their statistics - they should liaise with you and the consultant.

I know it is an absolute pain in the back side - but you have to fight for it. Then you can ask for a second opinion somewhere else.

If you need any extra help, even drafting out the letter - please PM, I am more than happy to help you.

Fayann xxx

sillyswede

Hi Fayann, and thank you for your advice.

I rang my GP surgery as soon as I got back and had a call back within 40 mins. My Gps have been great, very supportive and are behind me all the way.
I have another 'new' appointment at a different hospital on the 4th of October. Story is the local hospital told me I'd have to wait 12 weeks to be seen, so my GP referred me to a different on aswell and the plan was to go for the quicker one. Managed somehow to get an appointment locally for today, but intentionally didn't cancel the one a bit further away, so my GP told me today he thinks I should go to that one aswell, for a 2nd opinion.
Life is becoming increasingly difficult, very quickly.

How's your ReA treating you now Fayann? Have you found what works for you?

SS xx

frogmorton

Hi Swedey

I am so glad you have good back up - this was a bad response you got and not what I would have expected.

Good for you taking the other appt too - why not? He'she may have some ideas which will help

Take care

Love

Toni xx

sillyswede

Thanks ever so much Toni. I'm disappointed that I left my appointment not a whole lot better, other than having the diagnosis confirmed. To be told to get pain meds and ride it out and wait for it to get better felt like a big fat smack in the face :roll: I never expected to hear that from a Rheumy!! And especially as it's already been going on for 8 months. No follow-up either.
Nevermind, I shall await the other appointment and see what's said then. It's only 2 weeks away xx

frogmorton

Less than two weeks

You will get there.

Make sure you take someone with you wont you.

Just ask for what you ned - I am sorry it backfired so badly - sometimes they are not nice people or you get them on a bad day.

This next one has to be different.

Try not to be too upset today and not think about it too much - stress and upset honestly mke things worse.

Love

Toni xx

Rainbow77

Hi

I am glad that you phoned your dr and you have a back up plan. That is good. If you have had the symptoms for 8 months then that shows that it is not going to go away by it self with painkillers.

I am doing well thanks - but I think you will need Dmards - disease modifying drugs. I took a combination of hydroxycholiquine and sulphasalazine - 6 tablets in all. I took that for 3 years and since march I have cut out the hydroxy and now cutting down the sulpha as research shows that 2 years on dmards dampens down the immune response with ReA. So hope to be off all my drugs by December.

Don't get fobbed off at your next appointment, tell them you are not moving until they sort you out!!! 'we shall not, we shall not be moved' - reminds me of the adrian mole book when they wore red socks!!!

Fayann xxx

skezier

Hi SS,

I am also glad you have a second appointment coming up soon..... I really hope it will be better than the first one! Its just not good when ey do that!

I will keep my fingers crossed for you and think the advice given by Fayann is a good way to start. You need some help and maybe the next one will be more willing?! Good luck and please keep us posted. ((( ))) and a huge hope Cris x

ironic

It's good that you have a 2nd opinion. It worked for me so with luck you should have a far better outcome.

Good luck,

Lv, Ix