Hi everyone, I'm hoping that someone might be able to help me with a bit of a dilemma. I'm really sorry that this post is so long, but I think a bit of background is needed first...
I've been ill for almost 20 years, have a diagnosis of M.E but also have a symptom that has yet to be explained. I have regular dizzy spells and an almost constant disequilibrium. Sitting on ordinary chairs is extremely uncomfortable and it feels like everything is moving slightly.
I have a new doctor, who has been incredibly helpful, and is determined to get to the bottom of what's causing this symptom, which debilitates my life more than any of the M.E symptoms.
I was sent to see an ENT consultant again recently (I had seen one early on in my illness and had had inner ear problems ruled out from the basic tests) and the audiogram and other basic tests produced normal results again. Purely because I've had this symptom for so long, the consultant decided to refer me for the caloric test just to make absolute sure that it's not an inner ear problem, but told me that it will be extremely unpleasant and is very likely to come back negative.
I was already beginning to doubt the logic in having this test, when the fact that it's a two hour long test and sounds invasive, could set the M.E back a bit let alone whatever is causing the main symptoms, and all for likely negative results. Then I received a series of forms to fill in to take with me to the test. They're basically a set of forms about anxiety and depression.
Some years back, when I didn't fit into the expected category by a neurologist, I was dismissed as likely having anxiety. The thing is, I DO have anxiety, but as a result of these scary and debilitating symptoms, rather than being the cause of them. Being diagnosed with anxiety pretty much stopped any further investigations, and I'm loathe to have that barrier back in place once again on the basis of a series of tick boxes that ask me questions such as "Do you feel frustrated because of your illness?" Funnily enough, after 20 years of this, yes I do
but that doesn't mean it's the cause of my symptoms.
Anyway, what I would love some advice about is whether it is worth having this test, considering the unlikely outcome of any help or diagnosis based on the initial findings, and also does anyone know the significance of the forms about anxiety and depression please? I keep changing my mind about this, I have a letter ready to send to the doctor to explain why I've cancelled the appointment, but on the other hand I'm desperate to find out what the heck is causing this, so even if it is a very very slim chance of finding out, maybe I should go through with it anyway?