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Discussion Starter #1
I have had my follow up appt with the rhemy cancelled and they haven't even given me another one. It was 10 weeks gap till my ollow up.
I have been really ill, my gp has been desperately trying to get me seen sooner as he is concerned about me.
I know that my bloods showed ANA and ENA positive positive rnp and some things not quite right with liver/kidney function. This is unreal, i know that the rheumatology department at the hospital is having problems, my gp phoned and spoke to the rheumy last week after i got all my bloods printed out by my diabetic consultant. The rheumatologist said she was going to try to get me seen asap, now look!!
She did tell the gp to start me on plaquenil.
Gggrrrrrrrrr.
Sorry ladies i am so upset i feel like phoning the hospital and going mad. If i hadn't felt so unwell and been so sick i wouldn't be so upset, but i genuinly have been very ill and i'm trying to cope with children.
I have been waiting all this time and now this.
I've left a message for my gp to call me, i know e's not going to be happpy!!

:yell::yell::yell::cry2::cry2::yell::yell:​

Cassie
 

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Cad,

I am truly sorry to hear this news!

I would phone the hospital though and ask to speak the the secretary of your Rhuemitologist get her to explain why this cancelled appointment has happened! Also tell her how bad you are presently!

I would not just leave it down to your GP, although you seem to have really good GP them phoning is not the same of info coming from the horses mouth!

Have you started on Plaquenil yet? You will need to see an Opthamologist for baseline eye test!

Take care,

Lesley
 

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Discussion Starter #3
Hi,
Yes i phone dthe hospital. Couldn't get through to the rheumy secretary.
I don't expect much sympathy from them though.
When i was first referred i had to wait 8 wks to be seen. When i started to get much worse, my gp contacted the hospital to request that my appt be brought forward and i be seen urgently. 1 wk later he nor i had heard anything. So i phoned back and spoke to one of the secretaries, i explained what my gp ad said and done.
She reponded by saying "Well i don't know what benefit your ging to get from coming sooner".
Gggrrr.
To this i did not lose the plot but calmly replied well the benefit to me is that i am sever pain and i am getting rapidly and progressively worse and we don't know whats wrong with me!
My gp said that this was totally unexceptble of her.
Yes i am on plaquenil, have been on it since last Tuesday.

Cassie :(
 

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Hi Cassie,

You have every right to be mad :mad: That is awful, especially when you are feeling so ill and we all know how much we count on our appointments at times like that.

I really hope your GP can do something about it as you obviously need to be seen sooner rather than later.

hugs :hug:
Katharine
 

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Cassie,

I'm glad youve started the Plaq. when do you go for your eye test!

The Rhuemi will not perform the eye test you need to see the eye specialist!

Lesley
 

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Discussion Starter #6
Hi,
Yes i seen an orthamologist regularly due to my diabetes. Saw the consultant about three weks ago.
So was goo dthat it happened to be just before i started the pluenil.

Cassie
 

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Hi Cassie,

I know how you feel, I've had 3 rheumy appointments rescheduled. Thankfully at the time I wasn't ill enough to warrant pushing them for an earlier appointment. One of the rheumy's did call me and explain that there was a huge shortage of doctors in the entire Glasgow area and rheumatology was one of the busiest departments. I think we have 6 hospitals in Glasgow and they are all struggling with the amount of patients.

I was advised that if needed, my GP could call them and I would be seen in the rheumatology day ward. This happened recently and they did see me. I really hope your GP can push to get you seen as soon as possible.

Keep us posted.

Hugz, :hug:

Pam xxx
 

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cassie,

I am sorry your having such a tough time getting in to see a doctor.

That is appalling to me.

Hopefully your GP will help you.

Keep us posted.
 

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Discussion Starter #9
Hi ladies,
thanks for your feedback.
I did speak to my gp and he said that he's gona e mail Dr. laversuch- rheumatologist and say that we can't just wait for them to send an appt when they feel like it, thats not all he said either :lol:
So i am back in the place where i just have to wait and see and this time i don't even have an appt date to focus on Oh well. I think next time i get as bad as did in Wednesday i might just roll up at the A&E department and see how i get on there! :hehe:

Thanks Ladies
Cassie
 

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(((Oh Cassie)))

I am so glad that your GP is going to give those rheumys a good talking to.

:mad: To that seceretary! For someone to be that insensitive is outrageous! Sometimes I would like to see people like that walk in my shoes for a day.

Hang in there and take care.
Love,
Lyn
 

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Those people who answer phones sometimes seem to believe that they control the world. You have very real problems -- and I agree you should head to emergency if you get bad again. To have someone make light of your illness is unspeakable.

I hope you get an appointment soon and that the receptionist with the snippy attitude gets her comeuppence.

Sunny
 

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Discussion Starter #12
Hi Ladies,
:lol: :rotfl: :lol:​

Thats what i thought about the secretary.
I thought how would you feel if you could'nt walk properly, couldn't breath properly, had chronic ain and your hair was falling out.

:eek: :eek: :eek:

:lol:​

You would probably be in complete kaos, and think your world was coming to an end. it's easy to say those things when it's happening to some one else! :p

Cassie
 

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Hello Cassie
You have started on the Plaquenil which as you know will take several months to have any appreciable effect. You can get your eyes tested by a high street optometrist if you don't have an obvious access route to an ophthalmologist. It should be done within a few weeks of starting Plaquenil.
I suppose that having diabetes could be a complicating factor.
My hubby has diabetes 2 and gets his eyes tested once a year so maybe you can get the tests done quickly enough on the NHS through your GP's surgery.
Eye damage is very rare but nobody wants to take unnecessary risks.

MCTD would be treated the same as lupus although there might be supplementary treatment tips for the particular symptoms such as Raynaud's. You can ask here and read up reliable sites.

You need to sort out this weird business of not taking the amitryptline with Plaquenil Maybe your GP does have some interactions listed on his PC or maybe there is some particular reason why you shouldn't although i';s hard to say what it could be and would be very interesting to know what it is.
It's safe to say that they are very often taken together and I have never heard or read of any reason why they shouldn't be.

You need all the help that you can get and it would be tragic if you are being deprived of an essential med for no good reason ! Usually people take some Prednisone and NSAIDs to tide them over until the Plaquenil takes effect I understand that Pred could be out of the question because of your diabetes. Maybe in the circumstances a short course would do more good than harm as unrelieved pain isn't too good for the body either, nor is the emotional and psychological stress of its effect on your life. Or there may well be other other sorts of pankillers that would be appropriate. Perhaps your endocrinologist could help out with the Pred decision Perhaps there is a pain specialist in your area.

I do hope you can get some help soon
All the best and hugs
Clare
 

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Discussion Starter #14
Hi Ladies,
See other post re: st thomas for medication details etc.
Thanks Claire :)

I have been referred for hydrotherapy but am still on the waiting list.
I will definately follow up the amirtryptaline thing with my gp.
There is a pain clininc in my area but as far as i am aware you need to be experiencing chronic pain for 6mths or more to be referred. I will look into this though, its been about that now anyway.
I think what i will do is see if my gp gets anywhere next week and if not go directly to the pct. As i do feel that this is an unexceptable level of care.
I feel quite confident in doing this, as i previously worked for a charity which supported drug and alcohol users in challenging poor levels of care and practice in their services. I also was involved at planning and commisioning level in getting service users to attend planning and commissioning meetings and influence future plans for services. I also work as a representative of the healthcare commision.
So they don't frighten me!!! :rotfl:
Anyway just have to keep plugging away at things, there is nothing else i can do.

Thanks ladies

Cassie
 

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Cassie,

I'm waiting on my appointment with my local 'chronic pain clinic' - GP managed to refer okay due to fact that I have a chronic disease which makes it hard to control and deal with pain! Also the fact that I have 4 kids and my problems are greatly impacting upon thier lives and that of my husbands! Plus the fact GP and I dont think I would qualify for DLA I need more medical assistance therefore to get through life!

Lesley
 

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Discussion Starter #16
Hi ladies,
I have an update!
I received a letter this morning from the consultant saying that she had reviewed my results and they indicate MCTD as a pose to active lupus.
She did say that she was sorry for the delay in me being reviewed and that there is a new locum being appointed in about a month to take on my first consultants patients, but that she is fitting in those who need to be seen more quickly in to extra clinics. She said that the delays were being caused by matters that beyond herself and the other consultant control.

It was atleast nice to receive this, my gp said that he was ofcourse pushing for me to be seen before the month expires. So fingers crossed.

Cassie.
 

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Hi Cassie,

Good that you heard something... At least when we have an appointment or they acknowledge us we feel like we are being heard... I hope your appointment is very soon, and you start feeling better soon also... I know plaquenil can take a long time to work, but for me it was a matter of weeks... I hope this is the same for you.... Take care of yourself and get lots of rest...

Love Penny
 

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I'm so pleased that you are finally getting somewhere!

Hearing from a consultant is good and hopefully your GP can put you in the urgent pile of patients!

Take care
Love Lesley
 
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