One big question mark

I think I have mentioned before that I have lots of symptoms that are unexplained, and which don’t really fit into my current diagnosis ERA (enthesitis related arthritis). I was recently passed off by my previous rheumatologist as she felt out of her depths with me. especially because she is a Paediatric Rheumatologist, and I am 19 now. My new doctor, Dr. B, who I am with currently told me on first seeing me that she think I have a mix of autoimmune diseases. Something that I have thought for a while now. But many others before have thought this, but haven’t been able to give me a clear answer, or any answer really, to what they are. So I asked her how she was going to know which they were. She told me that certain diseases have certain patterns, and symptoms that fit into them, and on top of this she would be taking the weekend to think over this, and meet with my previous Rheum, Dr. G (who I loved), and talked through my history and everything with her. I was not completely reassured, but felt good that she wasn’t just rushing into something, to make me feel better.

Monday rolled around and I was told once again that she didn’t really know what was happening, that I was a complex case, and there were just an over whelming list of symptoms. Some of which at this stage where hard to discern whether they were due to an autoimmune disease or a side effect of the meds that I am on. So the great big question mark continued to loom over head, I was in the same position as before, still not really knowing what I have.

It is hard to live with a disease that changes your life, that limits what you can do, that dictates how you feel when you wake up, without having the comfort that everyone should have, of knowing what to do. It doesn’t help either that I pitch ideas to Dr. B which are solidly based having a lot of my symptoms fall under this disease, and often a gut feeling about it, that I get shot down. Before you ask, YES I know I am not a doctor, I understand that I could be wrong. But I do know my body, I do know what I go through and how this disease is playing out in me, and along with the huge amount of research that I have done, I think that this can allow me to pretty accurately identify where I think I fit. I think the two major things that bother me about her dismissals, is that the are always almost immediate. I rarely get the opportunity to explain why I think what I do, to show her what symptoms of this disease I identify in myself. Also her dismissals are so often based on lack of blood results, which infuriates me, as where does it leave those who are seronegative, those of use who know that bloods are not the be all and end all. Secondly I think I often take it hard because I feel like I am the only one know who is thinking about what it could be, who is still trying to classify me. I am the only one bringing new ideas to the table.

So what now? How do you live with all the what ifs and maybes? How do you leave all the uncertainty behind, all the fears and the worries, and come to terms with what the reality is now? That right now I don’t have a complete diagnosis, and that I may or may not ever get one.

I think that I am in two minds about all of this;

1. Everyone wants the safety and security of a diagnosis, and I am one of them. I feel it allows for more tailored treatments, and a better idea of how to monitor it, and what to possibly look out for. I guess all in all it comes down to my medical care, and the overwhelming feeling that if the could sort out exactly what I have I would have better management over all. Especially better management of my systemic symptoms. Also I feel like there would be less doubt, from myself and others, that all of this is really happening.

2. I and my mother (although her much more strongly than me) also believe that one shouldn’t get too stuck on diagnoses. That one should be more focused on symptoms that appear, and that if this is done effectively, a diagnosis is not essential. My mom keeps telling me that “whether you reach remission or not is not define by what diagnosis you have, so don’t let it consume you”.

What do you think about this?

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One thought on “One big question mark

  1. Sometimes treating the symptoms is safer than, pushing for all the answers. Most mixed tissue disorders show symptoms before they fully form. Don’t be in a hurry or push for a diagnoses, I was diagnosed at 10 with Behcets, in my 30’s I was told they thought it was a mixed tissue disorder of some kind, 2 years ago my answers came with the biggest flare of my life, but because I had already been diagnosed with Behcets the doctors stopped looking, even though symptoms I had didn’t completely match my diagnoses. It took me a years to get Behcets off my diagnoses. Now my full diagnoses is Lupus,secondary Sjogren’s, Raynauds, fibro, Vasculitis, neropathy, and Oestoarthris. Gentle hugs

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