The Lupus Forum banner
1 - 10 of 10 Posts

·
Premium Member
Joined
·
7,567 Posts
Discussion Starter · #1 ·
I had an emergency rheumy appt due to my latest symptoms of kidney problems and terrible pain and generally a flare that won't go.

I saw a registrar, she was unfamiliar with my notes and couldn't find the previous two docs entries :mad: 5 different nurses barged in and interrupted my consultation :eek:, it was extremely frustrating. She couldn't work out why I had pain in my back or why one side was so weak or why my reflexes were out. ITS IN THE NOTES!!!!! :hehe: I felt she thought I was making it up, she was uniterested in rashes etc and pictures of symptoms, I was getting really annoyed when she suddenly said I will go ask if the consultant wants you to start methotexate.

She came back and said steroids are obviously working stay on 15mgs for 3 months, look at these leaflets on methoterxate and sulfasine in the meantime. Decide which one you want to take, she favoured mtx. Next time I will meet the rheumy nurse, and will be started on one. In the meantime no urine checked :eek:bloods done, but she wanted me to have a back xray and mri which were not ordered? :mad:

I left feeling quite upset, not really sure why? I feel I am not really getting anywhere fast. Yet I have been given the opportunity to try new meds. I just felt I was being fobbed off. What do you guys think? Am I just being negative? Maybe I am just fed up of feeling so rotten?

Please let me know your thoughts.

Take care

Deb x
 

·
Registered
Joined
·
7,800 Posts
Hi Deb :(

I think I'd be pretty upset too. It's not really a great appointment. I suppose, like you, I'd have mixed feelings as it is good that you're being given the chance to start different meds... It's a pity you have to wait another three months though :(

I think, in your shoes I would tell your consultant (or the nurse) that you were unhappy with what happened when you next see him.

Katharine
 

·
Registered
Joined
·
4,369 Posts
Debs,

Phone your consultants sectretary and tell them all youve said here please!!!!

Hugs and hope you get things sorted soon!
Love
 

·
Pamela b
Joined
·
424 Posts
Sory Debs
Taht is not good at all and certainly sounds awful with nurses coming in during your consultation
I would certainly call the secretary and voice my concerns and ask as I am ahving problems why cant i start these meds right now when i decide which I prefer.
So sorry and hope you feel better soon

Pam
 

·
Registered
Joined
·
3,471 Posts
Debs, that ws a wierd apointment wasnt it, one weird rheumy too
cnat understand if they want you to start on a stronger med, why they didnt start you as from..... not waiting another 3 months, and like you said not even urine taken mmmmmmmmmmmm!! as for the mri scan x ray, that could get sent out in the post, i dont always think every apointment does go great, but thats a little offish to me


all the best Lin xxx
 

·
Registered
Joined
·
15,684 Posts
(((((((((Deb)))))))) That's a really unsatisfactory appointment considering all that's been going on with you :(:mad:

What did she say about the kidney problems, also did you get a chance to bring up the urinary incontinence and the catheterisation?

I'm so surprised you were offered Sulphasalazine!!!!! If that's what it was? Avoid it like the plague, no good for lupies, but good for severe arthritis. Methotrexate would help your joints and the spondylitis etc. but considering your other problems (possible nervous system probs and kidney probs) Imuran would have been a far better choice. I am thinking this registrar is pretty ill informed about Lupus :sad::sad::mad:

love
Lily
 

·
Premium Member
Joined
·
7,567 Posts
Discussion Starter · #7 ·
Thanks guys, to be honest the appt was like a step back in time. I confused her and I thought I had got past that. She didn't know what to make of my wide range of symptoms that differed wildly from the norm :lol: It was a bit depressing as they had stopped checking the weakness and I couldn't believe how much it had progressed without me noticing. I suppose you just adapt.

I was very suprised she offered me sulfasine but just kind of confirmed to me that she didn't really have a clue!!!! :hehe:

Still I am going to have an easy day today and try and pick myself up. Sometimes I don't want to be confronted with the reality of what my body is doing, my hubby is cross as he hates it and it is a bit hard at moment. One day at a time.

Hugs to all

Deb x
 

·
Registered
Joined
·
4,968 Posts
Hi Deb,

Just came across this post and wanted to let you know I am sorry your appointment did not go well. To wait another 3 months will be very tough and I think it is crazy.:mad::mad::mad:

Your right, one day at a time. Be good to yourself and rest when you can. I am thinking of you and sending gentle hugs across the ocean.:wink2::wink2::wink2:
 

·
Moderator
Joined
·
11,410 Posts
Oh My,

:eek:hno: What a horrible appointment.:mad:

Is there a way you could call back and voice what happened to you? Maybe get in to see someone else? Three months is way to long to wait for an appointment.

Our hubby's get very frustrated seeing us not feel good. It is really hard on our love ones seeing us hurt so much.Plus they can not fix the problem.

Hang in there Deb.
Love,
Lyn
 

·
Premium Member
Joined
·
7,567 Posts
Discussion Starter · #10 ·
Thanks Lyn and Karol, lovely to hear from you both. Seems like most of us are going through it at the moment. Hope you are both okay.

Love and hugs to all

Deb x
 
1 - 10 of 10 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top