Sunday, 26 December 2010

New Rheumy, New hope?

I recently saw my new EDS rheumy(rheumatologist)
For people with EDS, the rheumy is the top of the food chain when it comes to our long list of drs and medical professionals we see regularly.
He is the guy who is the EDS expert, the one who understands what EDS is, how it works and how it affects our different body systems...that's when we are lucky enough to finally find a rheumy who specialises in EDS!

The EDS rheumy is the wedding planner of our medical care. He coordinates all the other drs, decides what should and shouldn't happen and pulls all the other drs' tests, work and ideas together to get a full picture of what is going on in the EDS body. He then rolls out orders to the GP (family dr) to refer the eds patient to new specialists if needed, order more tests, start new or change current treatments and keep him up to date with what is going on. He will also contact other specialists working with the eds patient either directly or through the GP to discuss current treatment with the aim to either stop proposed treatment/surgery (an orthopaedic surgeon may think ligament tightening surgery will stop a joint dislocating but a EDS specialist may suspect that it will not with this patient), suggest treatment or avenues of investigation the other specialist hasn't thought of, or simply just to keep uptodate or create a new network with the specialist for future patients.

My previous EDS rheumy was one of the country's (and world's) leading EDS/HMS experts. Professor Howard Bird has made some of the most important discoveries and moved the research and treatment of eds/hms forward massively since he began taking a special interest in the condition in his early career.
His retirement shook the eds/hms community and the proposed closure of the specialist clinic that he had set up in Leeds, UK was feared.
I had been lucky enough to have been a patient of Prof Bird for 1 year before his retirement. Although I had received my diagnosis in 2007 I hadn't received any real treatment so was finally refereed to Prof Bird in December 2009 where I received a thorough assessment. It is here I found out how bad my body was affected, how much my joints had deteriorated due to lack of treatment and how I had developed scoliosis (curvature of the spine) and osteoarthritis of the SI joints (where the spine meets the pelvis.
It was also Prof Bird who noticed the obvious EDS characteristics in my Mum and due to taking such a detailed family history we discovered that both my parents had the EDS gene. My mother very affected, my dad only mildly. My mum has since gone on to receive treatment for pain and physio and is now waiting her initial appointment with my new rheumy.

So back to my new eds rheumy.

I had been given his details before my final appointment with Prof Bird by a fellow member of the Hypermobility Association (HMSA) who recommended him highly. I knew that with Prof Bird's upcoming retirement I would have to find a new rheumy experienced in EDS.
I was told Dr S. was a great dr and Prof B agreed that he would be the best rheumy for me.

My 1st appointment couldn't have gone better. Dr S. and his staff were very welcoming and pleasent and it didnt take long for me to relax and laugh at an unfortunate gramatical error on a recent discharge note with him.

We covered my current EDS issues, mainly my ongoing gastointestinal deteriation and
a new set of symptoms that some drs are suspecting could be indicative of Postural Orthostatic Tachychardia Syndrome (POTS), a form of Dysautonomia that can occur in EDS (see links at bottom for info on POTS)

I was in with Dr S for over an hour! I had to apologise profusely to the lady following me but she didnt mind 'at least he's thorough' she said. That he certainly is.

I then had lots of bloods taken.

I received a copy of the letter Dr S wrote to my gp within days.

He has requested a referral to Prof Aziz in London for my GI issues with a referral to a local GI consultant with knowledge of EDS for long term monitoring.
He has also requested that I have a number of tests done before I see my endocrinologist at the end of January. These are to look for other causes of my dropping blood pressure and raised heart rate that suggest POTS just in case.
Finally Dr S has requested copies of all correspondence from physio, orthopedics, pain clinic, endocrinology, past GI investigation and recent xrays, mri (hips and spine) and an endoscopy I am due to have next week. (To see if there is anything non-EDS causing my upper GI symptoms).

I will not be having regular follow-up appointments with Dr S as I already spend at least 1 day a week at hospital with appointments. Plus Dr S is trying to set up a eds/hms clinic and it is not financially viable to offer regular follow-up appointments to all patients.Instead Dr S said I can phone up and ask for an appointment if I have any serious issues or I can arrange a phone appointment.

I am looking forward to seeing the eds/hms clinic taking off with Dr S as it is very much needed in the North East of England.
Dr S admits he may not have the knowdlege and expertise of Prof Bird, after all he is only young and just starting his work with eds/hms patients, but he is very open and the most important thing is that unlike some drs, he will take the patient's suggestions and concerns when deciding on appropriate progression of treatment.

I am really looking forward to working with my new rheumy for the coming future and hope that as one of his patients that he will learn something from me.

links for further info :
Postural Orthostatic Tachychardia Syndrome (POTS) -


  1. I am so pleased that the new rheumy is efficien & empathetic. I too am in defense mode when seeing a new consultant. Latterly not having had much joy particularly with a neurologist! It makes a great deal of difference to be treated with resect. I sincerely hope your ongoing care is good. You deserve new hope.

  2. Hello there his site and blogs are so helpful!! I have been going to he doctors for years with pain and went through the ordeal like most with them not believing you and ignoring the symptoms! I just carried on pushing my self to work through the pain and taking any medication i could get at the time! In 2008 i had sciatica going down both legs on top pain through all my joints and muscles, i could barely walk, stand, sit or ly-down it was unbearable, i was getting know where with the doctors so i went private, where i got diagnosed in 2008! after ten years of going to the doctors and showing them my joint movement it never raised any alarm bells. I realise how little the doctors know about eds! i was told that there was one guy who specialised in this condition dr bird, but in the same breath was told he retired and now i see he had not at this time, disappointing, as 3 years on im no further on with help but my pain has worsened! I dont seem to have any one to support me with any knowledge on eds? I would be so grateful to be referred to some one is interested in the condition! I have had to ask for physio, pain clinic, mri scans and i even had to ask to see a rheumatologist as never seen one, nothing was suggest or offered other than take medication which brings on other problems, i have been saying since i was 17 about stomach problems and pains, i get lots of infections and swelling is this from eds?? Just been to doctors ten years on still having stomach problems server stabbing pains, my doctor suggested it maybe a pulled muscle!! But im used to that sort of pain! If anyone can give me some rheumatologists that specialise in eds. I just get a little over whelmed by the lack of support with eds! Thanks for your time and support, good luck on your journeys kim

  3. What area of the country do you live? there are a few drs who specialise in EDS, in london, manchester and sheffield.
    visit for info on drs.