Hospital Appointments with Professor Mathias and Endocrinology

I am proud to announce I made it up to London and back in one piece although it was pretty tough going. I actually managed to enjoy myself in the process which is a rarity for me.

Being a former East Londoner (which I never settled too much into really), I found myself staying in West London which was pretty much like a stranger in a strange land, I never ventured into Kensington & Chelsea territory when I lived in the City.

On route I saw the most stunning dress I made a mental note to buy when I go back, in a small boutique just off Sloane Street. The traffic was murder and we spent a good 40 minutes stuck outside the Victoria and Albert Museum sweating in the back of a black taxi before turning down a leafy road off Earls Court Road and onto Cromwell Road where the Rockwell Hotel awaited me. Apparently London is replacing all its gas mains for the Olympics so the entire city is gridlocked – my particular traffic jam was even mentioned on the One Show as Ross Kemp had been stuck in it as well.

The hotel was pretty swish for a small independent hotel – it’s really important where I stay is clean and allergy/dust free and quiet so this place ticked all the boxes. London is pretty much like New York  in that most of the hotels are either expensive upmarket ones or crap with a little box room. You can see where I stayed for yourself at

No sooner had the evil traffic made me over an hour late was it time for me to head off a couple of doors down the road to my physio appointment , by that point I was dripping wet, irritable and aching more than I’d ached in a long time.

I can safely say I’ve tried pretty much everything for my joint dysfunction and pain, Graded Exercise Therapy, acupuncture, shiatsu, Swedish massage, herbal remedies, magnesium baths, osteopathy – nothing has remotely worked apart from the treatment I received by Dr Briles in Cape Town which sadly I have been unable to locate in Sussex. I have been slowly getting worse again since I have stopped Dr Briles magic treatment and falling into that trap of despair where you have found the golden nugget – the thing that helps and makes you feel better, only to have it snatched away again.

I saw a sports injury massager, Danielle, who treats lots of top athletes and must have had healing hands or been able to read my body like a map or something as she managed to identify all of the points that were tangled and knarled like barbed wire running through my spine. The tendonitis was really painful but an hour later after being massaged and stretched, I felt like a new being – my pain melted away and I felt light and airy.

Needless to say I slept for about 12 hours when I got back to the hotel and had to be up early to attend my appointment with the Endocrinologist.

I arrived at St Mary’s Hospital in Paddington early, good job as the place is the size of a small city – a maze of tunnels and corridors and jutting out wings which nobody in their right mind could locate without a map. Amazingly I did not have to wait long and had my consultation with the registrar at first who took my history. She was unhappy with many of my symptoms and noted I had lots of swollen lymph nodes.  She was also unhappy about the amount of Shingles I have had (I showed her my current rash) and muttered something about Virology. The thought of being referred to McClure crossed my mind in horror.  She already noted my ACTH and Cortisol problem and wanted it re tested along with my thyroid, hormone and steroid levels and adrenaline – which I need to come back and be admitted as a day case for in a month’s time – then I would discuss the virology issue. They took my blood pressure whilst sitting then standing and noted the drop and confirmed POTS which I already knew anyway.

They also want me to see a Gynecologist as soon as possible about my endometriosis. The consultant, Dr Robinson, then came in and explained it’s possible I have a pituitary problem and made me an appointment for follow up – he was very kind and the clinic was very quick, thorough and friendly.

The next appointment was with Professor Mathias which was the one I was dreading, I could not bear the thought of being fobbed off again and not being taken seriously.  Professor Mathias is a funny man, he made me laugh and relax in my appointment but you can tell he knows his medicine and cares about the patient. I have a feeling he puts all his private funds into his research. I don’t think he had ever met a professional Patient Advocate before so he was quite taken aback by my medical knowledge and asked if I wanted to be a doctor. I replied I wish I had.

He immediately put my mind at ease and went through my old notes and got me to explain what had changed and what the main problems were. I explained that I had already been diagnosed with POTS in Cape Town and put on Fludrocortisone and I explained that he wrote a letter stating I didn’t have POTS when I was obviously worse now than when I had my autonomic tests done over a year ago and the POTS had now been confirmed by Dr May and Professor Graham. He acknowledged this without a problem, I was expecting him to still refer to the tests I had done a year ago but he wants to start again as he said I obviously have very in-depth complications and is very concerned, he was very worried but very sweet. He was also unhappy about my immunology tests so perhaps he is a route through which I can obtain anti virals if Dr Eren does not work out in July. Mathias also wants me to have a follow up with the rheumatologist – which has already been booked for August.

He was very concerned about my liver problem and is referring me to Professor Aziz who will recommend a decent liver consultant to do my Biopsy so I should see Aziz within a month I hope.

As for the blackouts and heart problems, I am being admitted as an inpatient at the National Neurology Hospital for further tests which will determine if I have a Cardiac  Arrhythmia, but the wait it quite long – but that is ok as I would have progressed with the liver specialist by then.

Professor Mathias also noted that I need care and looking after as autonomic conditions are serious. He is writing this to my GP and recommending different medications although he did not state which, I suspect it will be midodrine.

So the state of play is as follows:

July 25th: Immunologist follow up r.e Immunotherapy

August 10th/11th: Professor Graham r.e Ehlers Danlos and Endocrine Tests at St Marys, day admission

August 22nd: Further Endocrine tests at St Marys

September 27th: Consultation with Endocrinologist

Somewhere inbetween all that I need to see Professor Aziz, a liver specialist, have an ERCP and a Liver Biopsy and possibly surgery.

Then I can take a holiday!



1 Comment (+add yours?)

  1. Sharon Alexander
    Jan 12, 2013 @ 13:49:42

    Hi, you sound just like me- Do you have EDS? I have seen all the same as above. I wonder how your getting on now.


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