Wednesday, November 28, 2007

Ménière's disease

This is what my lovely new GP thinks could be wrong with me at the moment.
The antibiotics have done nothing and if anything it's getting worse, but my ears look fine. Having now read all of the NHS direct information about the suspected problem I'm depressed:
There is no cure for Ménière's disease. However, your GP and ear, nose and throat (ENT) specialist will be able to help you manage your symptoms. They will offer advice and information that is tailored to your individual needs, and develop a management plan that will help you cope more effectively with your symptoms.
Does that sound familiar or WHAT!
Exchange the words 'Ménière's disease' with ME/CFS and the ENT specialist for Neurologist and there you have what's been plaguing my life for the last 3-4 years!

Added to which I stupidly mentioned the discussion I had with some of the support group about what happens when I crash and how a couple of them didn't think it sounded like ME but more like epilepsy - I was cursing myself within minutes for mentioning it as instead of shrugging it off as I'd expected him to he said 'Disregard any of your previous notes, we'll take everything as new onset, I want to test you properly to rule out that possibility'


So now I'm going in AGAIN next week to be tested for epilepsy, I can't remember everything he said because I was too stunned by how quickly he changed from concluding the appointment to telling me about the tests and asking me to book myself in for another appointment.
I also can't help feeling like a hypochondriac again, why did I open my mouth? It's that STUPID wish that I had something treatable instead of this damned curse of an illness.

I'm pretty sure I don't have epilepsy, the crash thing would have been picked up before now surely?! ..and besides, what little research I've done (hurrah for DR internet eh?!) says that those kind of 'episodes' happen to kids, I've not seen mention of adult onset before.
I just feel that now I'm wasting his time with pointless tests all because I couldn't keep my bloomin' mouth shut.

I suppose I should be grateful that I have a Dr. who is willing to do anything to reassure me about any suspicions or.. well, anything.
But I would have accepted him telling me that it's unlikely to be absence seizures at my age, that's pretty much all I wanted him to do if I'm honest, just because I'm resigned to the CFS/ME label doesn't stop me having ridiculous dreams of the "you've been misdiagnosed, have some pills and be cured' conversation.
Perhaps THAT's what I should have said as I was leaving instead of "a few of us were comparing symptoms.."

Meh, I'll learn one day. I guess now I just wait and see what these blood tests show up. At least the last lot were fine, normal blood count so I'm NOT anemic, pressure is a bit low but nothing to worry about so it's just the ear thing.

1 comment:

Alexandra said...


I know is difficult but don't despair. ME gives sometimes very strange symptoms that the doctors may think is something else. I know that feeling "why did I told the doctor this?" because then they would start to think maybe is this or that and back to the hospital for more tests..I was several times "diagnosed" with things and then later the test would show nothing. Anyway if you do the test the Dr. asks then you can relax if everything is okay.