I had an appointment at the teaching clinic at my local hospital (Southend University Hospital) on Tuesday 24th where I was led to believe that junior doctors and medical students would attend to learn about rare medical problems like EM. This clinic takes place in the Renal Unit at the hospital.
However, when I was called in I was told by a Renal Consultant that the doctor who runs the clinic was unavailable. He was very apologetic but, having never come across an EM case was interested in learning about it. He had my health records and had obviously gone through them pretty thoroughly. He asked lots of questions and, despite my feet not being in flare mode, could see the effects that EM can have on them.
He then gave me a physical examination, blood pressure etc and whilst not disagreeing with the original diagnosis of primary EM thought that I could also have some Peripheral Vascular problems due to my lifetime smoking habit. He listened to all sorts of pulse points from my neck down to my feet and was concerned about the intractable ulcers on my feet which although small and not infected are proving difficult to heal due to the constant swelling.
Upshot of this is that I am now to be sent an appointment for a scan on furred up arteries.
He also had me make another appointment for the teaching clinic in September where it is hoped that the original intention of Tuesdays visit will come to pass.
It's good that at least you got a good consultation with a doctor. He sounds like he was really through and concerned, and that potential problems are being checked out. It's also good that the original teaching event will still take place.
There was a symposium of rare diseases at my local hospital a couple of years ago, attended by local GPs (including the out-of-hours ones), which has actually made it more difficult for me. Instead of having me, with severe primary EM and a flare practically guaranteed, they had someone with very mild secondary EM. He described his EM flares as being "very warm, with a pins and needles feeling and itchiness". I know from several of the doctors that he was actually putting his socks on between groups of doctors! As a result of this, many of the out-of-hours GPs didn't believe me when I would describe the pain I was in or that I needed opiates. So I was labelled a drug addict.
I am still working on that "giving doctors a taste of EM" machine. It would go a lot faster if only the police would stop coming and confiscating my prototypes... ;)
Starsmurf, That must have been so frustrating to hear. No two cases are exactly alike and if nothing else they should have had your case to compare against his. Anyway, who needs socks to keep their feet warm with EM. Once mine are flaring they take hours to stop.
I don't think the doctor who saw me was entirely convinced of my EM diagnosis although he didn't say as much. I never said it was either but that the symptoms I experience are nearer to EM than anything else. It was the other doctors I saw that said it was EM.
Whatever it is I didn't ask for it and don't want it - so will some genius please find the remedy to make it go away.
Like you, I also have a prototype on the go in my garden shed but I am keeping shtum about it locally until it is nearer completion. It will hopefully be ready for the next teaching clinic. Boiling water and fresh nettles are two of the key components and the bicycle pump to induce swelling will feature somewhere too. Just got to think of a place to incorporate it into the design.