Lupus/Sjogrens or not ...

[UrsaP]

I posted the other day as I had an appointment booked with a specialist Lupus clinic tom am. I was so glad to get this appointment in a recommended Centre of Excellence, as I have been trying for years to get properly considered for Lupus and Sjogrens. Basically my reoccurring symptoms have just been dismissed with ‘Patient is anxious about her health’ type of comments. Bloods have not shown posMany reoccurring symptoms over the years, with dry eyes since the early 1980’s, and a seriously dry mouth, overnight, since before 2013. Other symptoms could be lupus/sjogrens or hypothyroidism, (goitres started c early 1980’s) diagnosed with that n the 1990’s. Or they might be due to low adrenal function. (not recognised as Adrenal Fatigue doesn’t exist apparently. Right....till you experience it (Have the powers that be not learnt from the ME and other situations?) Anyway, back to my point. My appointment tomorrow will now be a telephone call. I can totally understand this, but I’m so disappointed as I was so hoping to get to the bottom of this. I have sent my latest bloods, which do show weak positive AI profile. (For the first time ever!) I’ve sent a summary of my history and reoccurring symptoms and a grid (which I keep for myself) of all blood tests I could collate. I had hoped to ask for a lip biopsy to rule Sjogrens in or out. Not sure that will be possible now.

I’m hoping this will be enough and telling for the consultant.

But with Covid 19, it is a worry. As so many say, Lupus puts you into the ‘vulnerable’ bracket. Hubby is immune suppressed so have to be careful there. There must be many people who like me are only at the start of a journey investigating the likelihood of Lupus, or Sjogrens, and are going to struggle to get diagnosed (correctly) in the current climate when face to face consultations are limited/not possible. Making it much harder for medics to be sure too.

Many people might not even know about Lupus to realise that Lupus or such is at play.

Will see what tomorrow brings.

[Hidden]

🙏 wishing you a safe journey forward. Please let us know how things turn out.

[UrsaP in reply to Hidden]

Hi and thank you for your reply. I got a call from the Lupus clinic, Consultant. But even after sending her my blood history, recent AI profile positive, A brief history of possible symptoms wtc. Not enough to diagnose anything over the phone. ‘Was I not satisfied with the diagnosis of Fibro' she asked. I have never been diagnosed with Fibro!! I got the impression that she had not really looked at the files I’s emailed over. Appointment postponed provisionally for 3 months. This flipping Covid!

[Hidden in reply to UrsaP]

That’s frustrating. I am so sorry!!

[UrsaP in reply to Hidden]

It is. I can understand the cancellation tho, avoiding face to face. Got to keep the front liners safe. Just frustrating I got the impression she hadn’t bothered to actually read through the info I’d sent. Even tho she was over half an hour late ringing. It was a waste of time really. I might have to ask to see the actual referral - often it is the referral tone/info that does not encourage investigation. Had that twice now in recent years. Will see what happens when the appointment happens, think 3 months is hopeful. Wont be holding my breath! Will be being careful. Have to anyway, hubby has immune suppressant meds.

[Hidden in reply to UrsaP]

Yes, I meant the fact that she hadn’t, obviously read through your file. I know she must have been flustered and tired, but, reading through and being careful is critical.

[UrsaP in reply to Hidden]

I suspect that she got as far as the AI profile and saw she did not have enough to diagnose so didn’t go further as can’t actually do anything until she can see me. At least it wasn’t outright cancelled. Hopefully when this Covid is done ... All these Dr’s have a hard time ahead. Don’t envy them this task. Avoiding unnecessary Face to Face appointments had to be. A week earlier I’d have got to see her, just poor timing.

[Hidden in reply to UrsaP]

Well, I wish you the best. I certainly wish this goes away as quickly as it came, and the harm and havoc goes with it.

[UrsaP in reply to Hidden]

And to you, if the ‘predictions’ are to be believed it is suppose toGo s quickly as it came! LOL

It has been nice to chat to you. Keep out of harms way and avoid the little devil at all cost. Regards

[Hidden in reply to UrsaP]

Ditto, and thank you!!

[KayHimm in reply to UrsaP]

Yes, this virus is making everything even harder for people like you. It has to be awful to finally think you may get answers and then have an appointment cancelled.

I think you are correct that they are triaging in all services. They may have looked over your file to make sure, as an example, that your kidneys, heart and lungs are fine and blood work not alarming. But, of course, they need to see you to examine your joints, check for hair loss and repeat blood work.

You have every reason to be angry. I am angry too. Hope you get re-scheduled soon.

K

[UrsaP in reply to KayHimm]

Yes, difficult times, can’t be too angry, as understand the need to reduce risk for all, especially front line workers. Just a bit frustrated that she didn’t seem to read the stuff I sent, but likely time restrictions. I know there are limitations but do feel if only they would take the time to listen and look properly it would save time in long run. At least I will get another appointment at some point. In the meantime we all need to keep ourselves safe and reduce risk for all. Wishing you well.

[KayHimm in reply to UrsaP]

She had the professional duty and responsibility to read your file. They are trained to know what needs to be acted on immediately and what can wait. It is very hard on you right now. But you need to be seen in person when there is time.

Hope it is soon that you get help.

K