Re appointments: So frustrated....had a first... - LUPUS UK

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Re appointments

kazhodluckymilo17 profile image

So frustrated....had a first appointment for rheumatology for 11th may....recieved letter today saying its been cancelled and had to speak to GP surgery to find out why .... apparently they want me to attend a different rheumatology dept dealing with arthritis and cant get an appointment until June....so frustrating feel like I am taking one step forward 2 back all the time .... been trying to get referred since June last year .... dont understand why they have changed me to another clinic when its all sited at the same bloody building....sorry for the rant but I was so upset today found it hard to ring for new appointment without crying....wondering if I will ever get to find out whats going on with me

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kazhodluckymilo17
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7 Replies

Better a later appointment with a better chance of success than an earlier one with no success

Lupylass profile image
Lupylass

When I got my first rheumatology appointment I was referred to one hospital but got my appointment through for a different hospital. It turned out the referral letter had been through a triage process and I was seeing the rheumatologist who specialised in what they thought was wrong with me.

I still see her, she is wonderful, she diagnosed me and got me well.

Perhaps that is why your appointment has been changed - to get you to the best suited specialist. Good luck with your appointment in June.

kazhodluckymilo

Which hospital is this, may I ask? I know what you mean. It must have been a great shock and disappointment. Could you please PM me if you prefer? x

Thanks Lupylass looking at it your comments this is probably the case but still so frustrating when you think at last you might be getting somewhere to have the rug pulled from under your feet again.....lets hope I am as lucky as you and finally get some sort of diagnosis

diane1428 profile image
diane1428

Please dont give in. We all feel the same - everytime i get an appointment they always change it. This time it was in my favour. Should have had an appointment in August but brought it forward to last week.

I feel the same 1 step forward 2 back. I now look at it that I take tiny steps so dont have to go back so much. Sounds peculiar I know but this disease does make you feel peculiar. Get in touch with the hospital and keep this June appt. but ask if they can also put you on the cancellation list. Who knows it might just help.

Keep in touch and rant all you like we all do at some stage and it really helps.

Regards Diane

tennissenior profile image
tennissenior

I go to a hematologist. I went to 3 rheumatologists and because there is really nothing to treat SLE and other conditions related to it, the meds they prescribe have devastating side effects, and your hematologist can order the same labs they do. I no longer see a rheumatologist. I see two doctors - a Primary Care doctor, and a hematologist/oncologist, and between the two, so far, I've survived 4 years without taking the meds that can make things worse. Activity, diet and drining water - three of the most important factors.

Fighting profile image
Fighting

As I can see from the 6 replies there are many ways to look at this. I might call back the first rheumatology department again and list reasons why I think theirs would suit me better. If the only reason you don't like the switch, is it's later. I would do what the one suggests and ask to also be put on a cancellation list. I would only do that though if my schedule was pretty open and I could get to an appointment on short notice. Feeling jerked around can increase feeling lousy. Ouch. I wish you the best Kazhodluckymilo17

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