I realise I haven’t done a general update for some time so I thought I ought to update everyone on what is and has been going on with my hospital appointments, the possible of some more diagnoses are currently being discussed as well as the possibility of more shoulder surgery.
2 weeks ago I managed to dislocate my shoulder in my sleep and then didn’t wake up straight away, so I was unable to relocate it myself and ended up in A&E. Until I had the x-rays and was examined I don’t think anyone believed I had dislocated it – I was quite calm, which is unusual for dislocations, usually people are screaming. After two attempts they manged to relocate my shoulder. The following week I saw my shoulder surgeon who had operated on that shoulder 18 months before. To say he was surprised was an understatement, he had done my shoulder up so tightly that on anyone with normal ligaments they still wouldn’t have had full range of movement, let alone had suffered a further dislocation. Unfortunately this just goes to show that my ligaments are like butter, so it is highly likely that I am going to need further surgery and my consultant is reviewing what the best options for me will be.
EDS can in some people be part of a triad of illnesses causing not only EDS but also postural orthostatic tachycardia syndrome (POTs) and mast cell activation disorder (MCAD). I am currently undergoing test to see if I also have these conditions. POTs is a condition that effects the heart and blood pressure causing symptoms such as, fainting, dizziness, palpitations, sickness and headaches. The triggers for causing these symptoms can be sitting or standing up, so the effect on peoples lives can be dramatic. MCAD is an auto immune condition that effects the white blood cells causing inappropriate histamine release, this means suffers can have allergic reactions to anything and the causes of those reactions can change on a daily basis. The symptoms can range from urticaria, flushing, tachycardia, wheezing and full blown anaphylaxis.
I have already seen the countries leading expert in MCAD a couple of weeks ago and spent an hour talking to him about my symptoms. He did scratch tests whilst I was there, which showed up a couple of allergens that I am particularly sensitive too. From there I have had a number of blood tests locally and have to go into London on Tuesday for a load more tests, hopefully at the end of these they will be able to rule in or out MCAD and then we can go onto a period of trial and error in terms of treatments regimes. I also have 2 new consultants that I will be seeing in connection with the MCAD and they will all work together.
EDS, POTS, MCAD and Prinzmetal’s are not curable conditions therefore the best I can hope for is to gain some semblance of control over my symptoms.