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The UKFibromyalgia Forums • View topic - Finally got the rheumy appointment through!



Finally got the rheumy appointment through!

Anything to do with the NHS or Private Healthcare.

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Finally got the rheumy appointment through!

Postby tyrannosauRoss » Mon Feb 27, 2012 11:58 pm

So in their final week to send me an appointment I got a phone call today. Wasn't fully paying attention at first but I think there was a cancellation and I've been booked in for this saturday at 11. Weird for an outpatient department to work on a weekend but heyho!

What should I expect for my first appointment? Some questions, maybe some tests and book an other for further ones? What are the chances of a diagnosis?
Also being all about the body and joints am I best wearing joggers not jeans so it's easier to test flexibility? Or even bring shorts so they can check leg postures and can see the joints and muscles more easily?

Anything else I should be aware of? Hoping I may get a letter through explaining everything.

I know it's a bit wrong but may reduce the appoint of painkillers I am on so it seems amplified, if they ask will just tell them it's a bad day and usually it's better.

I'm excited about it and thought I was prepared for any life changing diagnosis, part of the reason I joined here was to prepare myself. But honestly I'm already pant wettingly scared, it could be a day that changes my life forever and I am terrified for it.
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Re: Finally got the rheumy appointment through!

Postby Ldyalb » Tue Feb 28, 2012 12:57 am

I went wearing a skirt and tights (I appreciate this isn't an option for you) and the Rheumy had no problems moving me around. If your jeans are particularly stiff then maybe tracksuit bottoms, or a pair of shorts in your backpack just in case. You should be fine in a normal pair jeans I'd imagine, but if you're uncomfortable with the thought of having to take them off then I'd definitely pack the shorts just in case so you can change instead of being sat there in your underwear.

When I saw my first Rheumy he asked me about my symptoms. Then he examined me, looked at my joints, tested my reflexes, strength etc and then did the tender point test. It was then that he said he was 99.9% positive that I had Fibro, and not Lupus or RA as my GP suspected. He then ordered me a series of tests to confirm, bloods, x rays of hands, knees and feet and then ultrasounds of my hands too. Some of the blood work came back dodgy so I had to have more bloods ordered by him at a later date, plus an ultrasound of all my internal organs in the stomach area. I saw him on 14th October for that.

I saw him again on 6th Jan and he confirmed the diagnosis. I think it's likely that your Rheumy will investigate other possibilities to make sure, or you could have a very clear cut case of Fibro. Expect a tender point test and a general physical examination to check your strength, grip, joints etc. But all Rheumys work differently.

I'm glad you've finally got an appointment. I'm waiting for Rheumy number 3, was referred two weeks ago (GP suspects Autoimmune Arthritis). I've just had a letter saying I'll have to wait around 10 weeks before they contact me to make an appointment in 2-3 weeks. I've not heard of them doing Saturdays either - maybe there's such a massive backlog that's the only way for them to clear it? Lucky for you that someone cancelled :-)
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Re: Finally got the rheumy appointment through!

Postby tyrannosauRoss » Tue Feb 28, 2012 1:13 am

Well I think it was a cancellation. When you get that fed up answering the phone and getting sales calls, scammers etc you don't pay attention till it sounds important! It was clear why she was calling at first. This was week 12 for them to let inform me of an appointment, so I was preparing myself to phone up after fridays post delivery asking about it.

Thanks for clothing advice. I'll try and remember to pack shorts. I wear quite stiff slim jeans so aren't always the easiest for movement. I live in joggers at home for comfort.

Unless my doctor has referred me with a suspicion as far as I know I am going in there with symptons, instead of trying to prove I have X or if I don't have X. I may mention my suspicions to him, I'm not sure yet.
I have written a list of everything that's wrong with me, including the times when something extreme has happened. As an example I couldn't hold or use a fork due to the pain in my hands/wrist one night. And I've got some times of a journey I repeat often to give an indication of walking speeds. So hopefully I'm prepared in all that nonsense.
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Re: Finally got the rheumy appointment through!

Postby Jaycee » Tue Feb 28, 2012 8:45 am

Hi glad your appointment is through at last . I had to strip to underwear at mine which I wasn't expecting! Lots of moving different limbs to check range of movement, pressing and tapping on different parts to see if it hurt and lots of questions to answer. Didnt say much at the appointment but was referred for more tests after to rule out other conditions and have had a couple of phone consultations. I guess I was expecting more, but it's just been left to me and my gp, with an open i'll see you again if you want to.

Hope you get some answers and help.

J
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Finally got the rheumy appointment through!

Postby Mozza » Tue Feb 28, 2012 10:33 am

I was asked if i thought snything had triggerred the symptoms which i could verify straight away. I was asked loads of questions, laid on the bed and manouvered then got the pressure points after which the nurse was told to get me a booklet on fb, got bloods taken, referred back to gp and have never seem him since!!! Best part was getting the diagnosis after two years pf waffling docs and tests. Good luck for Saturday xxm
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Re: Finally got the rheumy appointment through!

Postby Ldyalb » Tue Feb 28, 2012 12:18 pm

When I went the Rheumy didn't ask about what the GPs thought might be wrong with me. He said he knew an overview of my symptoms, mainly joint and muscular pains and fatigue and that he wanted me to tell him in my own words when it started, how intense the pain is, where it is, any patterns and variations etc. He said this was so he wouldn't go in with any pre-conceived ideas. He also said he didn't want to look at the results of my blood tests until afterwards either. And I quote "seeing the results first would be cheating".

So I would probably just say that your GP has referred you because of XYZ symptoms and they're not sure why you're experiencing them and that they're hoping the Rheumy will be able to shed some light on it. If they then say 'is there anything they or you suspect is the cause?' then you could say that your GP said it might be Fibro.

After the first appointment I saw that Rheumy again twice, and then a 2nd Rheumy a year later as he was ill. She discharged me from their care early as I had since moved about 200 miles away and she said I needed treating locally. But others are discharged after one appointment. It varies a lot so there's no standard to expect really. Just expect to discuss the symptoms etc and a physical examination.

:fingerscrossed: the appointment goes well and you'll get an answer.
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Re: Finally got the rheumy appointment through!

Postby tyrannosauRoss » Tue Feb 28, 2012 12:51 pm

Thanks, one of the main concerns was that I would have to wait an other 12 weeks after the first appointment to find out the results of tests, but it seems this may not be the case.

As am sure you've all gone through it it's a day that could change everything, but at the same time nothing changes. And I'm going through denial that anything major and life altering is wrong.
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Re: Finally got the rheumy appointment through!

Postby shazq » Tue Feb 28, 2012 4:53 pm

:goodluck1: with your appt hope you get some answers.
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Re: Finally got the rheumy appointment through!

Postby tyrannosauRoss » Sat Mar 03, 2012 3:02 pm

Well that was a truly awful experience.

It was obvious that it was being held in a closed on weekends, half shut down hospital wing. Waiting for my appointment overheard one issue where a doctor ordered an xray to be taken on that day, but the xray department was closed. The poorly trained nursies (who also struggled with forms) were trying to find out what to do, I think in the end the patient is having to wait for the amazing NHS postal service for an appointment through. There was an other case of needing ice, and a nurse tried various wards and the cafe without any success.

The meeting with the doctor was short and felt rushed. He took some history and went "well the referall there's quite a lot listed, what's mainly wrong and we'll do that"...asking me to pick what was wrong with me! It's the EVERYTHING that's wrong! Anyway I mentioned my back and legs, which is the worse and causes the most problems. He asked my to narrow down my legs even further, hips and knees. Later on it was clear he was concentrating on the bone/joint aspect and not the muscles too.
Stripped down and performed the same routine the GP uses. Diagnosed hypermobility, no **** sherlock, I've been diagnosed that many times before, physio referial too. I mentioned that I've had it before and it didn't work, "but there's not harm in trying." At this point I wanted to cry.
He ordered bloods and again I had to wait around witnessing the poor organisation around me as I held back tears. The head nurse eventually took my blood and she asked more worthwhile questions than the doctor did (over all well being, what's ALL wrong, how it affects my day to day life, if I was employed) and seemed more concerned about me than the doctor did.
I was expecting to be there for 2hours, according to the letter I finally got today, so parents dropped me off. By the time I phoned them and told them I was done after 40minutes, and climbed into the car that was me in tears.

Will be back at my GP asap and explaining how useless it was. I want more done. I basically need sticks to walk as we went to a few stores afterwards and I was having to use their fittings and displays to support myself while walking and standing.

I've even started looking into the cost of private cause of this.
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Re: Finally got the rheumy appointment through!

Postby Jaycee » Sat Mar 03, 2012 5:24 pm

Hi so sorry to hear about your appointment experience after waiting so long for it to come through. I would go back to your GP to complain and see what they can suggest next. You obviously need proper attention and it certainly sounds like you caught them on a bad day. I think some rheumys do focus on joints, when I was referred the dr had been looking at RA and it was almost as though they were disappointed when it wasn't.

I think a private rheumy appointment is about £250, I'm lucky and have cover but it is limited so rheumy said would be happy to see me at his nhs clinic for follow ups if needed. So it may be a way of getting into the system with a decent rheumy. Tests and meds are expensive private but if you go to your GP with what the rheumy recommends sometimes they will arrange them via nhs.

Good luck.
J
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Re: Finally got the rheumy appointment through!

Postby Ldyalb » Sat Mar 03, 2012 6:05 pm

You need to ask your GP to refer you again so you can select another Hospital or Rheumatologist to see. Preferably you want him to refer you to someone with an interest in Fibro.

Your GP may also be able to refer you to an Occuptational Therapist to sort out the sticks. I bought mine online but it's only for very occasional use anyway.

Did the Rheumy not even do the tender point test? :-o

Even with Hypermobility he shouldn't have just been focusing on the joints - Hypermobility causes muscular pains as your muscles have to work harder to keep your joints in place. Plus Fibro and Hypermobility are often co-morbid.

I would definitely complain to your GP. Hopefully someone in the surgery will know someone who specialises in the right areas.
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Re: Finally got the rheumy appointment through!

Postby tyrannosauRoss » Sat Mar 03, 2012 7:24 pm

Thanks,

I may end up buying a pair. Again mine would be for occasional use.

I went in and the guy did ask if the doctor thought there was cause, I said no, I even kept my mouth shut with my own suspicions. I thought this would've cause a full body examination. All what happened was I lay on my back on the bed and he moved, lift etc my legs to various positions and angles, things my GP has done a thousand times before. When he touched my knee (don't know if that is a pressure point) that actually caused my to yelp out in pain, in amongst my usual old man style groaning in pain.
There was no tender point test, to my knowledge.

The GP I have been seeing about this is the orthopedics specialist in the practice and the one I've mostly seen over the years for various pain related referals.
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Re: Finally got the rheumy appointment through!

Postby Ldyalb » Sat Mar 03, 2012 9:56 pm

With the tender point test my Rheumy didn't tell me what he was doing when he did it.

Basically my GP was convinced I had Lupus, and if not Lupus, definitely an Autoimmune Disease. So I was thinking it was Lupus or RA. I'd seen details of Fibro but assumed I couldn't have it as I didn't have bowel and digestive issues.

Right at the end the Rheumy said 'stand up for me for a minute' and I just knew he was going to do the Fibro Tender point test. I yelped loudly for most and was shocked as I honestly didn't think it was Fibro.

http://www.fibroaction.org/Articles/The ... onals.aspx

If you go to the bottom then the knees do have a tender point. The Rheumy did say after he did it that he now knew what it was and that it was Fibro.
'Think of all the beauty still left around you and be happy' - Anne Frank

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Re: Finally got the rheumy appointment through!

Postby tyrannosauRoss » Sun Mar 04, 2012 12:42 pm

The only other one I'm aware he did was the possibly the one on the back. Apart from mine was higher up. One side hurt more than the other.

I found this but really need to email and ask about pricing for a diagnosis/examination/physical. I don't really know what to call it:
http://www.edinburghrheumatologypractice.co.uk/

The other option would be health insurance then cancel it after a year XD
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Re: Finally got the rheumy appointment through!

Postby FluppyPuffy » Sun Mar 04, 2012 1:25 pm

The thing with health insurance type things is that there is usually a qualifying period, such as 6 months, before you are able to make a claim. With you already being treated for, altho not dx'd with yet, a chronic pain condition they may consider it a pre~existing condition and either not provide cover for it, refuse a claim for the particular, or more than likely both :facepalm: :facepalm: :facepalm:


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