My old friend – square one!


They say the journey of a thousand miles begins with one step. Well the appointment on Saturday was that first step. Funny really as I thought I was reaching the end of medical diagnostic and treatment journey but as it turns out that hasn't really begun yet. I feel a little bit like we have gone back to square one, however, at least if it is, we are now on square one of the right board.

Well what a week it has been. On Saturday, I saw a super-consultant. In my mind, there are now a new breed of consultant who are incredibly specialised and have a sharp focus on one specific disease or illness. In February, last year I saw the super-consultant for EDS and on Saturday I saw the one for POTS. He gave me an hour of his time on a Saturday and never once did he try to rush, he was amazing by the sheer fact he listened, understood and beyond that had a good idea of what was causing the problems.

So, we know that I have EDS and we now strongly suspect I have not only Postural Orthostatics Tachycardia Syndrome (POTS) but also Mast Cell Activation Disorder (MCAD). It looks like I will be spending some time in some specialised hospitals in London, with some of the countries leading experts in MCAD and POTS, having a host of test and hopefully getting some more answers. My understanding at the moment is that Pots is an issue that mainly effects the heart and autonomic system and MCAD effects the immune system but in turn can effect all major systems of the body. Much like the EDS the conditions are not curable but there are certain treatments that's they can try to help manage the symptoms. Though the doctor was keen to manage my expectations and said if we get a 5-10% improvement in symptoms then that's is considered a good win. The treatments for MCAD range from a mix of antihistamines and immunosuppressant drugs to polychemotherapy as a last resort.

Also this week I saw my regular cardiologist and if you remember we were all geared up for a heart failure diagnosis. Well the good news is that I am not in heart failure - he is 95% certain it's not and I just need to have 1 more test to completely rule it out. They are quite urgently trying to rule out pulmonary embolisms and if that is ruled out then he wants to refer me to a respiratory specialist. This will be done hand in hand with the London hospitals so we can rule out any 'mainstream' respiratory problems and then they can investigate a bit closer with regards to the POTS and MCAD.

So a busy week. Mainly a positive week but I am not going to lie, I feel a little like I have been hit by train.

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