Old 03-15-2017, 10:44 AM #1
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Exclamation Diagnosis process

Hello,

I was just wondering how long it took people to get their fibro diagnosis?
My physiotherapist told me that it sounds like I have it and to go to my GP - he has said it sounds likely that I do have it, but we still have to diagnose it and discount any other illnesses etc.
To my understanding, you cannot get any help like DLA or PIP in the UK until you have a diagnosis so I am eager for answers - even just for my own peace of mind!

How long did it take for your diagnosis' to come through, and was it a hard process?

Gentle hugs xoxo
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Old 03-15-2017, 11:26 AM #2
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Default Re: Diagnosis process

Hiya. I live in the U.K. Too and I wish I could tell you its a fairly quick process but in truth, everything on the NHS takes time. I've had problems with pain that date back at least 7 years, I've had hydrotherapy, physiotherapy, pain management, numerous x-rays and no diagnosis. In the last 2 years my pain and symptoms have kicked up a notch and I would say it's taken around a year & a half between seeing my GP to being referred to rheumatology, having numerous tests to rule everything out and finally getting a diagnosis on Monday. I'm waiting for an MRI of both knees at the minute because they've got so bad & the waiting time at the moment is 3 months. Good luck with getting a diagnosis and just be a bit pushy to get seen, get results etc. I was told the rheumatology clinics were fully booked until 2018 but I toned the secretary and asked to be seen sooner. It definitely pays to keep pushing a bit so you don't get lost under the radar.
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Old 03-15-2017, 11:56 AM #3
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Default Re: Diagnosis process

I have a question. Is the final diagnosis of FMS or CF given only by a Rheumatologist in the UK? I ask this because it's different in Canada. We can be referred to a Rheumatologist if we press the point but a good Physician can not only diagnose but treat as well. Certainly saves time moving through the medical system. Especially beneficial for patients eagerly awaiting a diagnosis and treatment.
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Old 03-15-2017, 12:27 PM #4
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Default Re: Diagnosis process

Yes it's usually a rheumatology consultant who would give the diagnosis. The GP only refers you and can prescribe painkillers and anti inflammatories while waiting for a rheumatology appointment
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Old 03-15-2017, 12:50 PM #5
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Default Re: Diagnosis process

Quote:
Originally Posted by Lou38 View Post
Yes it's usually a rheumatology consultant who would give the diagnosis. The GP only refers you and can prescribe painkillers and anti inflammatories while waiting for a rheumatology appointment

Thank you Lou38,

I feel bad that our UK friends have to wait so long for definitive diagnosis and treatment. Waiting to see specialists are a long drawn out process, even here in Canada. We can wait for 2 years for some tests. Our medical system is flawed.
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Old 03-16-2017, 12:56 PM #6
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Default Re: Diagnosis process

Thank you for your replies..
That is very frustrating because that is not what my doctor was giving me the impression of, he was talking about us looking at official diagnosis in the next month or so and didnt talk at all about being referred on for one! I obviously didnt expect a diagnosis soon at all, but feel completely in the dark about this whole process at the moment. I saw my GP yesterday and he has signed me off for a few weeks and my bloods came back with a very low vit D count, and I feel annoyed because he made it sound like giving me some boosters would fix all of this... I have had this for years and its been the last year, that has really upped it!
I am definitely going to be pushy, I'm not being forgotten about or pushed to the back of a list- it wont change anything I know, but it will be good to have answers. I was also told about waiting lists for several things, I needed surgery last year and was told that I would easily wait a year - I pushed and kicked off and I had my surgery within a month or two, so it definitely pays off. I am making a pain of myself at the GPs at the moment - they will not forget about me!!!!!
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Old 03-16-2017, 03:08 PM #7
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Default Re: Diagnosis process

Hi boobug. Sorry your GP has kept you in the dark. I've worked for the NHS for years so know a bit about how things work and everything takes so long. It may be different in England than it is here in Scotland but I don't think it'll differ that much. In my experience pushy patients get treated quicker than 'nice' patients who sit back and wait! I hope you get some answers soon.
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