Looking for a good Rheumatologist in Scotland

slowleopard

Hi,

Short Version
I am looking for a good, well respected Rheumatologist in Scotland but outside Aberdeen. Preferably NHS although at this point private is not out of the question. This Doctor should be open to and keen to solve unusual symptom presentations. They should not be of the mindset where one test is negative and they just discharge you despite other symptoms.

Long Version
My story is kind of complicated and up in the air. I am male and 30 years old. I have been living with some form of Fatigue disorder for over 4 years. Doctors use FIbromyalgia and CFS pretty much interchangeably with me which is why I say Fatigue disorder. When I say 'living with' it has not been much of a life. My ability to work dropped steadily for 3 years until just over a year ago I had to stop work.

The first symptoms were fatigue, lack of concentration, migraines and other symptoms which are classic of CFS and Fibromyalgia (which are in essence the same thing, Fibromyalgia indicating a higher level of pain). This was following a simple set of 4 * 1 day operations to drain an abscess. These were successful in terms of the abscess but I have never been the same again.

A week after the first operation I got really bad stomach pains. These progressed to spasms in the early evening, coming on every 5 minutes and lasting 60 seconds or so, I would pass blood and was otherwise on the floor in pain. G-Docs came out in the night and gave me an anti-spasmodic injection, my own GP then admitted me to hospital where I spend 4 days. I came out, desperate to get out of that Gastro ward, probably not quite better. I collapsed the next day and spend an hour on the floor.

In hospital they gave me a colonoscopy and a junior doctor told me it was ischemic colitis. They later told me that I was too young for that, shrugged their shoulders and discharged me. I still get these spasms from time to time although not as bad.

I picked up from that level and got back to work 40 hours a week. Every 3-6 months or so my health deteriorated so I went to 32 hours, 24 hours then 16 hours. Fortunately my work situation is good and if I can work any hours at all they are likely to be available to me.

This is all sounding like CFS and some form of IBS so you are likely wondering what I am doing on Arthritis forum. About two years ago I started getting pains in my wrists. It was hard to do things like open heavy doors. Three months later and my fingers had swollen up, my right index finger in particular. I was referred to a rheumatologist by my GP. I saw the junior Dr who diagnosed FIbromyalgia. He then went and got the consultant who confirmed. They looked at my hands, could not explain them and sent me on my way. Both hands are swollen, my wedding ring was fitted just before this happened and I can no longer put it on.

So I carried on, trying to deal with things, getting pain meds, sedatives and all sorts from my GP. Then I saw a private GP specialising in fatigue disorders. Working on daily routine, approach to things etc my fatigue did ease to some degree. The pain however did not, my neck, my back, my hip and my ribs are all now very painful. This private GP when he saw my hands (see below) was quite shocked and told me to see a rheumatologist ASAP. I went to my GP who had a similar reaction and referred me back. I had not had him examine my hands since I was last in the rheumatologist. I had just accepted the Fibromyalgia diagnosis and thought maybe it was part of it, turns out this is unlikely though as Fibromyalgia should have no visible signs.





Whilst the fight index finger is clearly swollen, the others are still stiff and more swollen than they were before.

On this past Christmas day I was taken into hospital, hypoxic with a chest infection compounded by athsma and the pain in my ribs limiting me to shallow breaths. I spent 5 days in hospital, during which time they found me a Rheumatologist. A young guy who seemed interested in getting to the bottom of it. He ordered an MRI of what I though was my hands and back (turned out he did not order the hands). He thought I may have Ankylosing Spondylitis although the MRI and genetic testing came back negative.

So, I went to see him two months after Christmas where he told me of the results. I asked him why he did not MRI my hands, I got silence then a change of subject. He eventually agreed to do them with some mutterings that I should prepare for them being negative. He then tried to talk me into saying my symptoms were more CFS related, the complete opposite of what a doctor should do. Look at the symptoms and signs then diagnose. Not diagnose then crowbar the symptoms in. He also reluctantly gave me an intramuscular steroid injection.

A few weeks later I saw my GP who also put me on 30mg prednisolone tapering off over a two week period. The change was amazing. After 24 hours I was back to how I felt when I was working 16 hours a week. That is to say still sore if I did too much and with some physical limitations. This lasted 2 weeks although, reducing a bit but overall a success.

So, I feel these three rheumatologists, especially the first two, have just seen the negative blood test and turfed me rather than try to investigate further. It may just be a lack of communication skills and I get that. But none of them have managed to explain my hands and all of them have failed to explain why if I have CFS or Fibromyalgia am I the only patient in the entire world with physically observable signs. They call CFS the invisible illness, because doctors cannot see symptoms. Many doctors in fact do not believe CFS exists.

So maybe I have had or still have CFS but my hands are either something else entirely or part of different whole condition. The fact that my neck and hip are really bad makes me feel like it is part of the same thing.

In the absence however of a positive blood test (which I understand is not 100% proof of a lack of a rheumatological condition) the rheumatologists I have seen are indifferent, dismissive and in my opinion very bad doctors who are just trying to turn me around out the door.

This is the reason I have posted here. If I do not get traction on my next appointment I am going to get an out of area referral. My GP has told me he is happy to do this. I know I may come across crazy writing this, I am not hell bent on making this a rheumatological condition. I really would rather it is something else as I am sure all of you will understand. I just feel that the doctors in Aberdeen have not attempted to properly investigate and if necessary symptomatically treat whatever it is I have. It really feels like they do not want to take the time, and maybe they do not have it to spare.

The fact that they cannot explain my hands and seem to change the subject when I bring it up is infuriating. As is their labelling it as an illness which has no observable signs.

I have lost 4 years of my life and so far the first two rheumatologists are responsible for 18 months of that. I want to see a known, respected and interested doctor so that I can be confident in whatever diagnosis and treatment they suggest. If they say that it is not a rheumatological issue then I will accept that, I am just not confident that the Aberdeen doctors have done their job thoroughly and with diligence

Thank you for reading if you got this far, it has been tough to type as well. I hope you have a good day

stickywicket

Welcome to the forum, slowleopard, but that’s a ‘long and winding road’ you’ve travelled searching for a diagnosis. I know it’s sometimes not easy when the bloods don’t oblige and quite a few on here have had – or are still having – frustrating waits.

Obviously, we’re not doctors and can’t diagnose. It certainly could be arthritis but that doesn’t mean to say it is.

I can’t even help with your request for a rheumatologist as I don’t live in Scotland but we do have quite a few Scottish people on here and hopefully some will look in soon. There is also a Scottish forum now http://www.arthritis-care-connect.org.uk/scotland/ .

You might find our Helpline people useful too.

magenta

Hiya,

I'm Scottish! I want to say hello and welcome you to the forum. I live in Lanarkshire and unfortunately, I'm in the same boat as you. I too would like to know if there's a good rheumy in Scotland.

I've had a negative RF for over 20yrs. Been seen by about 10 rheumys now. The first one, diagnosed sero-neg arthritis but they then decided that they didn't know what was wrong with me.

I've since been diagnosed with fibro and have OA in my neck, both sides of jaw, big toe, hands/fingers/thumbs and possibly other joints too. Also have a bulging disc in my neck. All of which I was told, not much wrong with you, go away and get on with it. I've had a positive RF in February and my GP has asked for my last rheumy to see me again but still waiting.

It's very frustrating but you have to keep pushing.

I wish you well and hope you get somewhere with your GP, maybe getting the out of area referral will get you the answers you're looking for.

Take care and keep posting,

Magenta x

skezier

Hi slowleopard,

Love the name

welcome to the forum from me as well and I am sure that your hands need further investigation... they look a bit like mine actually. I have pa and oa in mine and the joints are similar though I don;t have the lump.

You clearly need to see someone and get some real help.... There is a good one that had helped a friend of mine but I think they would be too far from you to see you under the nhs....

I am only talking 2nd hand as I live in Cornwall and well we have a fairly.... health are here (fill in the blanks with any negative word you can think of :roll: )

Its the same for Eileen but both of you just need one person to take interest and help you!

I hope someone will be able to help and hang in there. Nice to meet you Cris x

Something else i meant to say... IBD can come at any age so that also needs more investigation.... I have had crohn's most my life and thats now lead to IBS as well and hep is out there some please talk to your gp and if they don;t help see another one cus we often have to fight our corner to get the help we need. x

slowleopard

Thanks for the replies.

I have gotten past the point I think of just letting doctors take their own time, need to really keep on top of things and make sure as much as is possible is done in parallel and is chased up. Fortunately at least things are now moving much faster since Christmas.

I just got totally blindsided by the rheumatologists attitude last time, it really was like night and day from what he was at Christmas. Hopefully the fact the steroids worked, plus the swelling will make him less dismissive. I would have been happier if he had just said he did not think it was rheumatological, the fact that he suggested CFS made me think that he did not understand what CFS is. This is worrying to me, not that he does not understand it (it is not his speciality) but that he suggests it as a diagnosis when he does not understand it.

I am a complete medical cynic now. I blame TV programmes like E.R and House, as well as that Greys nonsense my wife watches. They give everyone false hope. Usually the young doctor with the messed up love life will think of something that everyone else does not agree with but will then work hard on it and save the day.

skezier wrote:

Love the name

Came to me when I joined a CFS forum 2 years ago and had the default OSX Snow Leopard Wallpaper. I now do the technical stuff for that site, not that there is much but it helps the mods and owner/admin do the real forum stuff.

DebraKelly

My own consultant is Dr McRorie at the Western General Hospital in Edinburgh. He has been my consultant since I was diagnosed 3 years ago and I rely on him completely.

But I would first get in touch with your GP.

slowleopard

Thanks,

I did speak to my GP about it. He is also frustrated that that there is nothing in between a specialist and a GP. He cannot order the tests the specialists can yet the specialists have narrow vision.

It was actually my GP who suggested something like this to find a good referral. I am asking people I know in the medical profession as well, plus I will speak to my GP again this week.

Hopefully I will not need an out of area referral but I want to know who and where it may be so that if I get discharged I will be ready for the next step right away instead of waiting another week or two.

All these week or two waits are really starting to add up.

stickywicket

You sound to have a very supportive GP and that's a big plus.

I do understand the frustration of all the waiting but, if you do get a diagnosis of arthritis, I promise you the waiting won't end there. At any given time I'm waiting for at least one sort of appointment and sometimes two or three.

slowleopard

Yeah, I know I am being unrealistic with timescales in some ways.

I saw my current rheumatologist last week and whilst not confrontational I did have at him a bit. The "test" . . . "2 months" . . . "another test" . . "2 months" cycle is very frustrating. He MRI'd my back, then 2 months, then MRI's hands, then 2 months, now he wants a biopsy of my hand and a consult with an orthopedic surgeon.

To try and avoid another part of the cycle I asked him in theory what would be next if the biopsy came back with nothing. He told me then we would be in a difficult situation with no diagnosis. OK I though, how would we go about treating that?

"Pain Killers"

FFS.

I think my GP is now pushing as much as he can, trying to be the missing diagnostic specialist. He is also not not as hard on test results. Whilst I know he understands their value he is not as blinkered as the rheumatologist seems to be.

For the moment I will keep going with this rheumatologist, plus I see my GP again the day I finish my current 4 week course of steroids. At the moment things are moving on but I can see a wall coming up.

There really is a missing "Dr House" in the system and I hope my GP can step up to it for my case. My ESA is being cut this week (the 1 year working partner thing). I understand the sentiment but even the WRAG people met with me once and understood . . . if I was well enough I would walk into well paid work.

They are trying to force me back to work off of ESA, but it is medical help I need and it is very very lacking. With all the various private treatments I am now putting even more of a strain on my wife and my parents.

Sorry for the rambling rant, just getting a bit much today. I quite simply want to go to work.

thewifie

Next nearest would be Dr. Grays in Elgin or Ninewells in Dundee. Can you get your doctor to check out Rheumatologists in these hospitals.