Update - w/c 7th November

Wow, well what started out as pretty much a self-therapy blog seems to have attracted a lot of attention. Last week my husband published a link on facebook, without telling me as I would have said no. I have been absolutely overwhelmed with the positive response I have had from friends and strangers – I never thought anyone really read my posts but apparently they do. This is probably quite a good thing as many of my friends and family won’t know that I am ill as I tend to say I am fine and change the subject very quickly so people don’t always know what is going on – apparently this can be frustrating.

This week has been a bit of roller coaster, after spending much of the weekend writing on here about Prinzmetal’s I had a really bad attack and was rushed into hospital by ambulance on Saturday night / Sunday morning. I hate all that fuss but even I have to admit this time it was necessary, though it can be quite frightening to be in the back of a wagon on blues, munching on aspirin and being taken straight into cardiac care. I would have put money on the fact I was having a heart attack this time, thankfully my Trop T was negative at 3, though I think negative result depends on which professional body you ask, I believe the Mayo clinic suggest anything over 0.01 is elevated, so another question on the list for the cardiologist at the end of the month.

In hospital I was another lovely cardiology consultant, my own wasn’t on call at the time, which is fair enough, we spoke about the under lying autoimmune problem I have and she has given me the name of a geneticist to go and see, she also mentioned a condition called Ehlers Danlos Syndrome which I have been doing some reading around and I think it looks quite likely, so something to talk about with my pain management consultants. It would be amazing if we could solve what the underlying condition is called. Although it will probably make little to know difference in the treatment of symptoms – it will give me a name and stop me research random medical conditions, we all know, if you look at google long enough you can convince yourself you have bubonic plague.

I have been released from hospital but this recent attack has left me feeling like I have been hit by a train, however no time to be ill or rest as I had a consultant appointment first thing on Tuesday morning. This time another Orthopaedic specialist, as my shoulders keep slipping out of the joints. He had a good look and commented that my shoulders were particularly unstable, he also did a Beighton score and when looking at the passive hyperextension of the knees I got a wow. To be fair the test is if the knee joint goes backwards beyond 10°, the physio measured mine and they go to about 45°. There is no doubt at all that my joints are extremely hypermobile, maybe there is hope for me yet, I could run away and join the circus.

The long and short of the appointment is that I had an arthrogram and MRI on Wednesday morning and I now have a sore shoulder where I have had dye injected in to the joint. We are tackling the shoulders 1 at a time as if I do need to have surgery then I won’t have to have both arms in a sling at the same time as that would basically be a straitjacket – though some may feel that is appropriate. I wait with baited breath for the results.

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