Life Without a Diagnosis- a Health Update

The brain MRI results are back! Thankfully, they did not find any physical abnormalities so that rules out tumours and lesions. Now I’ve been referred to a neurologist. The waiting list for neuro is many months long so I won’t get any more medical support until well into the new year.

I’m trying to come to terms with the fact that I may never get a diagnosis. I won’t necessarily ever find out what my prognosis is and so I’ll have to take each day as it comes. I don’t know whether my walking will improve, stay the same, or deteriorate.

My biggest fear at the moment is that I’ll lose control of my arms too. If that was to happen, I’d completely lose my independence. It’s a scary thought.

For me, the most frustrating thing about not having a diagnosis is that I can’t explain/justify my symptoms to anyone else. My disability is clearly visible, but when people ask why I can’t walk properly, there’s not much info I can give them. Usually I say something along the lines of ‘my legs themselves are fine, but we think there’s a problem with the nerves leading down to them.’ It’s a bit of a guess, but it’s the only theory I’ve got so far.

What makes it more confusing is that my walking ability varies throughout the day. It gets worse if I’ve been standing for too long or if I’ve been stationary for too long. You have to walk the duck-walk-tightrope between too little and too much rest. People get quite judgemental if they see me walking *almost* normally one moment and barely able to lift my foot of the ground the next.

 

I’m slowly (very, very, very slowly) getting used to having a visible disability. I’m trying not to let other people’s stares or judgement drag me down. I’m trying not to get so embarrassed every single time I fall over in front of people. But mostly, I’m trying to find a way to regain a sense of control over my life, my body and my mind.

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