Test results – mixed feelings

I received my mitochondrial profile results and am feel mixed about it.  Essentially, my mitochondrial function came back low but not as low as would apparently be expected of someone of my level of illness.  What this means in practice is that although improving my mitochondrial functioning could improve my health, there are other factors that are also contributing to my poor health which will need identifying and treating.

I never thought of the mitochondrial stuff as being curative but I was hoping it might be a route to some recovery. The information available on just how much this can achieve is confusing. This doctor does genuinely seem to believe she has found a protocol that will fix ‘CFS’ and that only very few people don’t get better when they follow it correctly (in those cases she recommends trying various other routes to help).  The protocol is very difficult to follow. I am also unsure as to how this protocol fits in to other developments being made in to the causes and treatment of ME, and indeed the existence of ME as a separate disorder at all.

The protocol does sound promising but I’m not feeling as ‘sure’ that this is the path to health as I was. Truly, it’s this result that has thrown me.  The Dr has done research that suggests one part of the test results corresponds with a CFS level of functioning scale. I’m not a mathematician but when I looked at the graph there were a lot of results that fitted outside of this.  I’ve also spoken to others online whose results came back different to how they expected. I’m just not convinced this is a good way of working out someone’s functioning level.  Or perhaps I’m just saying that because mine didn’t fit?  It’s just made me question where this fits for me.

That said, i am ploughing forward with this protocol.  Others have had good results and the science seems pretty sound.  The dr was actually great in terms of suggesting alternative reasons for my symptoms, things to test for and ways to treat them.  One thing she did mention was that my symptoms and presentation sounds more like MS than ME.  I agree in a lot of ways. I used to question whether I had MS  a lot. I’m not sure if it explains how ill I’m feeling though?  Apparently she would treat them the same regardless.  I will write some posts about the things she suggested another time but there really is an overwhelming amount!

One of the disappointing things is that because the results don’t match my level of illness, I can’t really use this report alone for evidence to social services or for benefits. In the case of social services, they already believe I am not as ill as I think I am and frankly, this could fuel the fire.  This is unfortunate as I really need some medical back up as to my condition, although it was unlikely they’d take it that seriously anyway due to me not having met this dr face to face.

The other difficult thing is that I am having to be extra careful not to let this be fuel for my own self questioning as to how ill I really am.  Unexpected results or not, this dr wrote of no doubt of physical illness. I must try to remember that. So far, I am doing pretty ok.

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2 thoughts on “Test results – mixed feelings

  1. Have you had an mri for MS? Its something ive questioned and looked into myself. I guess there is no reason why couldnt have both ME and MS? Just try have patience and stay within your limits

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    • I did have MRIs for ms in 2010/2011, yeah. All clear. Multiple relapses since then do something could have shown up since but over time my illness has become more ME like.

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