Still here

New diagnosis and before diagnosis
1

I am currently doing a long silent scream. It’s now been 7 months since all this started, and I can’t see myself ever getting diagnosed. It’s 4 months since I saw the neurologist and 2 months since my MRI. I have no answers, not even results from the MRI (been told verbally by GP that brain was fine, but there are ‘issues with the spine’ but not ones that indicate ms). I was referred for nerve conduction tests a month ago, but haven’t heard anything about that directly. I had a physio referral 4 months ago, and haven’t had anything back from that either, even though GP wrote them a stinking letter of complaint.

My GP told me that I should focus on the fact that I’m ‘better’ and accept the fact that even with all the tests I probably won’t get a diagnosis for what happened to me (notice the tense).

Thing is, whilst I am hugely better now, I’m still not the same person as I used to be. I still have a reduction in sensation in my right foot, my right leg is still heavy and fatigues quicker than the rest of me, I can’t wear ‘heavy’ shoes/boots, loud noises still hurt my head, my tinnitus is super loud, I get awful pains in my left Achilles’ tendon, which comes and goes for a few days at a time. I tend to trip over towards the end of the day.

All of these are minor put to what I’ve been through, but they are persistent and I think that they mean I’m not better, and whatever happened to me is still with me. I got the impression from my GP that she thinks I’m a hypochondriac wanting attention for telling her that I still have issues.

just needed to let that out!

Paula

2

I remember reading somewhere that a large part of the GPs day is spent gently explaining to people that they’re going to have to learn to put up with whatever’s troubling them because most of the things that routinely go the matter are not curable. So there might be an element of that in your GP’s approach.

Having said which, if there is something with a name going on, it will almost always reveal itself, time being the best diagnostician. But we all know how our perception of time passing can vary according to circumstance, and it does tend to pass awfully slowly for a person waiting for test results or waiting for the next thing to happen. But it does still pass.

Alison

3

Thanks Alison. I just needed to scream out loud. I’m back to my normal patient self again now. I think the not knowing plus young kids, stressful job and a desperate desire for family adventures, is messing with my mental health!

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