Saturday, 2 May 2015

Let down again....another ignorant Rheumatologist

Well as the title says I am still no closer to a definitive diagnosis due to the ignorance of many Rheumatologists.  I have seen five Rheumys now at three different hospitals, all of whom suspected autoimmune disease under the heading mixed connective tissue disease but because of negative inconclusive bloodwork will not diagnose me. I am fed up.  I wanted to see a consultant who is known to diagnose seronegative lupus/mctd because with all my symptoms I believed he would understand immediately.  Unfortunately his hospital assigned me to another guy who really was quite patronising to be honest! How hard is it to find someone who knows what they are talking about?? Very apparently! 

Yes I am complicated but so are many other people and they get their diagnosis!  I have been in pain every single day for over five years now and I am still fighting for a correct diagnosis!  Ask anyone with chronic illnesses and they will tell you they go through a roller coaster of emotions frequently and you can have some very dark thoughts at times. You feel so alone and isolated and when you struggle to get a diagnosis it makes it worse because you feel nobody believes you.  This is something I hear frequently from patients on support forums and makes me so sad. We do not want to be ill.  I do not want to be ill but have come to accept that is my reality.  I just want to find a treatment that works to improve my quality of life. I do not want to be on meds every day for the rest of my life never really knowing what they are doing to my insides, but if that is what it takes to feel slightly more normal and maybe in slightly less pain every day so I can get on with things like taking my kids to the park without feeling like I am going to collapse with exhaustion then that is what I will do.

Over the years I have tried many different meds with varying results.  Rheumy number three put me on anti-tnf injections which helped somewhat and Rheumy number four put me on Hydroxychloroquine which helped even more.  If I don't have an autoimmune disease as they keep trying to tell me, how can these drugs be so effective?? I know my own body and will continue to fight for recognition. 

Now....which Rheumy to try next?? 

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