An update on the medical tests and results I have most recently received.
I mentioned a couple of months ago that I am having tests done to get to the bottom of what I can only describe as a ridiculously over-the-top adrenal response to the smallest and simplest of things.
I was sent for a Synacthen Test at Peterborough City Hospital. They test the blood before and after an injection of adrenaline. It tests the function of the adrenal glands stress response. Even before I had M.E. my body would go into shock after injections – one brother and my sister are the same and no matter how calm and ‘mind over matter’ we approach it, we will all pass out 90% of the time. Great fun! Because I know I’m likely to faint I always tell the nurse and get my chair tipped back ready haha. This time I managed to stay conscious but the feverish feeling was as unpleasant as I remember. The injection of adrenaline was painful and unpleasant as I’d been warned it would be but the blood tests before and after we’re fine.
Guess what? The tests were all clear. Sigh. What a situation to be in when you want positive test results, simply so that you can receive treatment and/or feel like you’re not making up your ilhealth.
When I was diagnosed with having M.E. back in 2010, there was the mention of it actually being Addison’s Disease. This has now been well and truly ruled out.
I then had to take a 24 hour urine sample. I had to come off all of my medication and restrict my diet for 48 hours in total: 24 hours before the test and 24 hours during it.
And guess what? Completely clear again. Grrrr. It is honestly becoming so frustrating now – 7 years in.
The endocrinologist confirmed what we already knew – that I, and pretty much all of us M.E. sufferers, am/are something of a medical mystery. He was incredibly understanding though and has given me another huge 24 hour sample bottle to use the next time I experience one of these incredibly dramatic shock responses. I’ve had a few since then but he told me to wait until I have a really, really bad one in the hope that the sample will then show up something. Anything. I am to make an appointment with him if/when my sample is done.
In 2016 I visited The National Hospital for Neurology and Neurosurgery in Queen’s Square, London, to be tested for suspected Periodic Paralysis.
It came about when I was asked to relist each of my symptoms and mentioned in passing that I often get ‘stuck’ or ‘seemingly paralysed’ when I am at my poorliest. My GP couldn’t believe how flippantly I was talking about such a serious symptom, but that’s what happens when you have this condition. It becomes your normal; you learn the hard way that you are left by the medical profession to fend for yourself and just get on with whatever M.E. throws at you.
My results took an absolute age to come back.
Guess what? I don’t have Periodic Paralysis. The fact that I can still swallow and the fact that I am unable to speak during each ‘episode’ had suggested that I wasn’t a classic case anyway. It seems that it is infact ‘just’ another M.E. symptom; perhaps extreme exhaustion presenting itself in this way. I know I’m not alone I’m suffering from it.
Summing it up
So now I feel like I’m wasting their time; like there’s no point. For once I have been treated with immense respect and not once felt like my diagnosis of M.E. has meant that I receive a hurtful and frustrating response from medical professionals. But I feel my appointments and the specialists’ time should be taken up, not by me, but by another person desperately seeking answers that they may will get. Someone else could have the appointments and the time and support. I feel, rather dramatically perhaps, that I’m a bit of a lost cause.
I have received no answers and no treatment because that’s just how it goes with M.E.
I have a follow up appointment with the neurologist at the NHNN in February but I a, struggling to see the point of it. There was a slight abnormality in one of my genes (my parents are being tested to see if they have it too) but I feel that we’re clutching at straws now. My blood samples will stay ‘on file’ with the NHNN and be regularly tested when new research comes to light but I won’t be holding my breath.
3 thoughts on “Testing Testing”
I’m sorry you didn’t get answers. You are Just as worthy of these appointments and medical care as anyone else, including those with ‘typical’ symptoms. Personally I think it’s worth you Still seeing them. I’ve heard with the periodic paralysis that clinic can be a bit hit or miss, especially for people with symptoms they have decided are atypical. Apparently a lot of the genes responsible just haven’t been found yet. I am on a group for people with pp and some people can’t speak or open eyes durimg episodes.
I am actually seriously consider buying a potassium meter since I can’t get to the hospital for an appointment or tests. Expensive and I feel like a hypochondriac but I need to find out what’s going on and hopefully how to manage it.
I would describe my ME symptoms exactly the same way. I still think we deserve to have regular visits with specialists. And, if they want to rule something out, let them. It will add to their understanding of the severity of our illness. And, if you are really lucky, you might find out you have something that can be improved.
Your comment really struck a chord with me Jayne, thank you. I have my next follow up appointment with the NHNN in a couple of weeks and I will now go into it with fresh eyes. Thank you.