Finally got an appt to see Rheumy Number 3

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Finally got an appt to see Rheumy Number 3

Postby Ldyalb » Tue May 08, 2012 11:44 am

As some of you know I have suspected autoimmune arthritis (most likely Psoriatic). Rheumy number 2 discharged me in November '11 but said if my symptoms of arthritis were still present in early Dec then I needed a scan of my hands. GP continually ignored her advice and refused to scan them, even when one of the fingers started to change shape. I saw a different GP in Feb and he referred me to a Rheumy, but still didn't sort out the scans.

I have been waiting aaaaages for an appointment (and been getting very angry in the mean time). Today they rang me up. My local hospital (50-60 mins away by 2 buses in my nearest town) can't see me until July at the earliest. But if I attend a clinic in a town in the middle of the next county then I can be seen a week on Friday.

So I finally have my appointment :-D

I'm annoyed it's such a drag, the town it's in is 1hr 30 mins away by 2 buses, may need a 3rd bus/taxi to get to the clinic's location from there. Hopefully my Mum can organise time off work to take me and save me the long drag by public transport. I'm annoyed that I can't be seen locally for so long, but the main thing is that I can be seen.

I had my engagement ring finger equivalent on my right hand measured 2 weeks ago. It's a size M. Until January I was wearing a size K ring on that finger which I've had since I was 11, so almost 13 years. It no longer fits. So in a very short space of time my finger has increased by 2 sizes :shock: so hopefully we can establish what else is wrong with me soon and get me some treatment. I'm using my walking stick more due to knee pain and can tell something else is going on. Hoping to get some more help with Fibro related stuff too, hopefully I can have Hydrotherapy or Physio again like I did last year :fingerscrossed:
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: Finally got an appt to see Rheumy Number 3

Postby Adele » Tue May 08, 2012 2:34 pm

best of luck with your appointment sweetheart. my GP doesn't even want to discuss my joints, hand and finger joints, wrists, hips, knees
and a few others are hot, inflamed, stiff, painful and i am bed ridden again. ask the receptionist at your docs to ask your doc to approve you for ambulance transport as you can't do the journey on buses. they will most likely send a volunteer driver to take you. if that doesn't work ring the hospital, the last one sent a taxi for me.

cant type anymore xx
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Re: Finally got an appt to see Rheumy Number 3

Postby shazq » Tue May 08, 2012 3:17 pm

:goodluck1: with your appt :fingerscrossed: this one is more helpful.
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Re: Finally got an appt to see Rheumy Number 3

Postby Ldyalb » Tue May 08, 2012 4:29 pm

That's a good idea Adele, my Mum had a volunteer driver once as she was having an Op and couldn't drive afterwards, and Dad and I don't drive. If Mum can't take me I'll ask the surgery.

Luckily it's on a Friday. Mum does a clinic in our village in the morning, and then drives back to her office in another town for 2pm after lunch. Appt is at 12 so hopefully Mum can get someone else to do the clinic, or leave early/cancel it for that week (no-one goes to it anyway) and then at least drop me off. Buses around here are decent so can manage it, but will be uncomfortable for such a long journey. She's quite worried about me so I suspect she may ask for the day/afternoon off to come with me.

I'm seeing my GP on Friday to discuss last week's blood tests (yet another 'hmm, you may have diabetes' moments from a Doc, this is about my 4th or 5th in the last 3 years) so will ask about it then. Surgery is closed tomorrow :-x

I will let you know how it goes, sounds like you have similar issues to me. I find that I've switched from hating the cold in bed and having a wheat bag in the bed with me, even in summer and when sharing with my boyfriend to try and reduce leg muscle stiffness to having such hot toes and fingers that I crave cold spots and keep my hands under my pillows for the cold. xxx
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: Finally got an appt to see Rheumy Number 3

Postby Sophiex » Sat May 12, 2012 9:31 am

Good luck with your appt! Sorry it's such a trek. :( Hopefully, you can get a proper diagnosis and treatment and they can refer you back to someone locally. I was at a hosp further away and getting there (my local hosp wasn't connected with the other one so they would never send the results in time!) was a nightmare. I'm at my local hosp with my diagnosis of RA now. I know you're not diagnosed yet but just saying to bear in mind that you might not want to be doing the journey too frequently. In the early days, I was there a lot for steroid jabs, bloods, x-rays etc and it was draining, as well as meaning my mum had to take time off work to get me there.

Anyway, hope it goes well and you finally get the answers you are looking for. My life has improved a lot on the right meds for RA. On a good day, I can take my dog to the park whereas 3 years ago, I couldn't walk up the stairs or wash my own hair. So, there is hope! Hang on to that. ;-) x
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Re: Finally got an appt to see Rheumy Number 3

Postby Ldyalb » Sat May 12, 2012 4:01 pm

Thanks Sophie :) I'm beginning to suspect mine might be RA. I had my blood results back (no diabetes) and I was told by Reception that they came back 'normal'. I spoke to my GP after that and he said my inflammation markers (ESR and CRP) were slightly above normal. I asked for a print out of the results and was interested to see that last time they checked my Rheumatoid Factor in November it was in the very top of the normal range. But I was no where near as bad then. It seems a few other things are outside of the normal range (they have exclammation marks in a column headed 'Ab' which I assume stands for abnormal. Of those I googled (ESR and CRP) my markers were outside of the normal range by 1-2 points so it matches up so to speak) so I will show the Rheumy the print out and discuss them with him/her.

I'll definitely ask the new Rheumy to check the RF levels again. It didn't help that the day I had my last bloods done was one of the best days I've had joint wise all year :roll: it seems my joints are flaring up again ready for Friday's appointment lol.

I would imagine I can usually go to the Hospital in the nearest town which is 30 mins away by bus to the town, then a 10-20 min bus ride from the centre to the Hospital. The only reason I'm going to the external health clinic is because I had to choose between doing that, or waiting until July/August :-x

I just hope the Rheumy can give me a provisional diagnosis on Friday whilst we wait for the results of more bloods and xrays/ultrasounds etc :fingerscrossed: - I want a name for my Arthur now! x
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: Finally got an appt to see Rheumy Number 3

Postby Ldyalb » Fri May 18, 2012 6:29 pm

Well it turned out a complete waste of a 2 hour round trip. Was only there for 15 mins! :-x

In November Rheumy 2 said I needed an ultrasound scan of my fingers if I still had joint swelling and stiffness in early December. GP consistently refused and maintained my hypermobile joints are too mobile to be arthritic.

Saw a different GP in Feb who referred me but also refused to run the ultrasounds the Rheumy had requested (in writing to my surgery) as he suspected Psoriatic Arthritis which he maintains doesn't show up on ultrasounds and 'best to see what the Rheumy wants'.

So finally saw Rheumy number 3 today. He didn't seem particularly interested, was more interested in my skin and my non pitted (atm) nails. He at least agreed that my Hypermobility Syndrome is worse than the first Rheumy initially found as my joints are becoming quite unstable. He seemed prepared to consider it may be EDS Type 3 due to poor healing wounds, scars and stretchy skin etc.

He's made no suggestions beyond 'you need an ultrasound scan' of your fingers. He's going to write to my GP and request it. I'm so angry. I've been telling them I've needed an Ultrasound for 6 months now. I had to drag out an hour by car to see him, as the only way to see him locally would be to wait until July/August. I drove 2 hours there and back, when none of my family is working (Dad's an OAP, Mum made redundant on Weds and me off sick since August '11) just to be told to 'come back when you've had some ultrasounds done'. What a waste of petrol money that was - spent 15 mins with someone who looked at my hands and said 'I can't do anything until you've been scanned'

Surely if he couldn't deal with anything for me without the ultrasounds they should have told my GP to make sure I had them done in advance?

Just hope my GP will run the scans now 2 Rheumy's have requested them. This one won't give me any treatment beyond anti-inflammatories which my body doesn't respond well to anyway (allergic to Ibuprofen, bad acid reflux) just in case it's a case of bad Tendon problems caused by Psoriasis, which I don't even have, bar some nail pitting and detachment, the latter of which my GP thinks is fungal in origin anyway.

I'm so gutted. I thought I'd at least have some idea of what might be wrong by now. When I first saw Rheumy 1 I spent an hour with him, he ordered 2 lots of blood tests, 3 sets of x rays and 2 sets of ultrasounds.

I need another blood test for my GP soon so I'll wait until I've seen him before I get it done as I want to get my Rheumatoid Factor levels checked as they were borderline in November and I'm much worse since then. I think it's worth checking them as my ESR and CRP are raised too.

I also have to ask the GP to prescribe me Celebrex (an anti inflam) on the Rheumy's instruction. I find the acid reflux horrendous though, it completely incapacitates me for at least an hour, often 2 when it attacks so I'm really not keen on taking them. Of course, sods law meant that my hands were better today than they've been in at least 2 months so they didn't look very swollen at all.

So all in all, not a good day. The only saving grace was that I finally replaced my grotty old glasses (drinking) from Uni with some nice ones from Morrisons like my in laws have, and that someone shared this with me on fb:

http://www.studentbeans.com/worldweirdw ... mpaign=WWW

and made me almost wet myself laughing.
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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