Private consultations

[Harry19]

Hi everyone . I posted a few months back after my gp told me they felt I had lupus , ana positive very elevated dsdna and lots of associated symptoms . I was referred to rheumatologist at that point . I have felt awful the last few weeks so called the appointment secretary to find out about my appointment . I am on the urgent waiting list. However this list is 4 months long from now . About 6 months in total 😢. Does any one know any private lupus specialist in South Wales please ? Not sure I can wait another 4 months .

[Staceylouise90]

Hello Harry, I’m sorry to hear your your struggling. Wow that’s a long waiting list I didn’t realise it was that long. I’ve literally been referred for the same as you. I can’t wait 4-6 months and may have to pay to privately ! Xx

[KayHimm in reply to Staceylouise90]

With your lung issues and the fact that you are already on prednisone, you would likely be seen soon. However, you have a pulmonologist, and she will be treating you for your major symptom. I don’t think you have to worry. There are guidelines regarding what constitutes urgent with every disease and specialty.

How much prednisone are you on? Is it helping?

XK

[Staceylouise90 in reply to KayHimm]

Evening Kay,

I hope not :/ I will calling my GP as they only gave me a weeks worth and want to confirm they’ve done referral etc.

I will speak to my pulmonologist Tuesday morning once she’s looked at the CT results so hopfully she know what to do regarding that. I am take 4 tablets a day 5mg each the GP said small dose for now? Pains in legs and arms have calmed it’s just my chest, this morning I woke up and called my mum as I sounded like I was dien with the sound bad rattling and the pain, that’s eased... just the pain still :/ worst when I lay down at bedtime and mornings, I hope you’re ok xx

[KayHimm in reply to Staceylouise90]

Well, that is still not a low dose. He probably only gave you a week’s worth pending results of the CT scan. Just a guess, but I would think the pulmonologist will decide on treatment based on CT and whatever tests are needed.

You really don’t need to worry about the rheumatology referral. You will be a priority. Remember your doctors can communicate easily about you.

You are covered. Try to have faith.

Thanks. Doing well. Just wish I could convince you that you will be taken care of!

XK

[Staceylouise90 in reply to KayHimm]

Ahhh ok, I just thought it was as he went I’ll give a low dose to start for now. I think so because he said it will very interesting to see what my CT scan shows... im dreading it, but also hopefully I’ll have more answers. Thank you Kay, I’m so sorry I just worry so much lol as I know how I feel and I just can’t keep waiting much longer. I know I think it’s from previous experiences with getting somewhere I haven’t got anywhere, and I’m hoping this time it’s taking seriously it that makes sense xxx

[Oshgosh]

Sometimes ,going to ANE can set things in motion.i went 3 times last year. The th order timeI saw an ANE GP.

She somehow got me an app( had been waiting all year) saw a consultant,had tests.

THen was admitted to A nE with acute shortness of breath. Hopthings go ok for you

[Harry19]

Blood test x

[creaky]

Hi Harry, I live in cardiff, and have experience of several Rheumatologists, I've sent you a personal message.

I hope that you feel better soon

[CecilyParsley]

Hi Harry, when I was first very unwell , I was told it would be an eight month wait. I felt as you do now very anxious and so ill. I agreed to a private consultation in a local hospital in Abergavenny. I saw theRheumatologist on a Friday privately and returned for tests on the Tuesday under the NHS. It was queue jumping and something I have always been opposed to butI was desperate. I really hope that you are seen soon, it is so scary feeling so ill x

[Wendy39]

Hello Harry

Just wondering how you are getting on?

Have you been able to see anyone?

It's so tricky with this pandemic. Every aspect of health care is effected.

I'm based in Pembrokeshire and runs LUPUS UK support groups in Pembrokeshire and Carmarthenshire. I also know the lady who runs the Cardiff group.

Let me know if you need any more help or have questions.

Best wishes

Wendy

[DELM in reply to Wendy39]

Hello Wendy, I am newly diagnosed lpus amd MCTD in April 2022. Living near Swansea - is Carmarthen support group still ruunning?

[Wendy39 in reply to DELM]

Hello.

Yes. I’m still running Pembrokeshire & Carmarthenshire support groups and Dalila runs the Cardiff group.

Thinking of having a meeting in the Cross Hands area at some point.

Happy to message you, or arrange a call to chat sometime.

In the meantime, here’s my details.

Best wishes

Wendy

[DELM in reply to Wendy39]

Thanks for replying , I would love to attend the Cross Hands meeting when it happens.

Delyth

[Wendy39]

My details

Lupus Support Group Poster

[DELM in reply to Wendy39]

Hi When is the next Carmarthen meeting?

Delyth

[Wendy39 in reply to DELM]

We have set dates for meetings until the end of the year:

Saturday 13th August 10-12 midday - Haverfordwest - Coffee#1

Tuesday 13th September 12 midday until 1pm - probably Cross Hands

Thursday 13th October 12 midday until 1pm - venue TBC

Wednesday 16th November 11am - 1pm - venue TBC

Thursday 15th December 1-2pm - venue TBC

These finish times are approximate, as meetings do tend to run over.

It's likely that the meeting on 13th September will be Cross Hands.

I try to alternate between Pembrokeshire and Carmarthenshire venues, and weekends and weekdays to suit those that work and those that don't.

Please feel free to contact me for further information.

Best wishes

Wendy

[DELM in reply to Wendy39]

Thankyou , I'll try to come to Cross Hands 13th Sept