I’m not writing as often as I would like to on this blog. But over the past months things have changed and gotten so confusing that it’s hard to even know what to write anymore.
This blog post isn’t about my ostomy, infact, my ostomy is a god send right now. If I didn’t have it I would be dealing with even more issues than I already am and would probably need to be in hospital.
I haven’t yet posted what symptoms I’ve started getting. I find them hard to come to terms with and except it’s all happening. Id also like to point out I’m in complete limbo right now. I have no idea what is wrong with me but the specialists are slowly finding things and I’m confident we’ll get to the bottom of it.
I began having what i called ‘fainting spells’ about 3 or 4 months ago, they would be accompanied by not being able to move my leg and arm on my left side or more recently, uncontrollable jerking of my leg. I have also experienced migraines and the light hurting my eyes so bad I find it hard to watch the TV with sunglasses on and the brightness turned all the way down.
We are starting to suspect that my ‘fainting spells’ are more of a mini seizure. My mum checked my eyes during one of the episodes and they were rolled back into my head.
I’ve been visiting a neurologist who specialises in auto immune conditions and he’s doing everything he can to get to the bottom of it. They have found something in my blood, related to the disease lupus that basically forms tiny clots and can form in your brain which could be causing my symptoms. This also means there is a high chance all my unexplained ulcerations and rashes could actually be the disease Lupus. I’m being tested for this next week.
I’m now at home in Peterborough with my parents resting. I decided to write about this experience on my blog because the diagnostic process is an incredibly hard thing to deal with. Always wondering what’s causing it and being told it could be a multitude of different things. At the moment I could have Behcets, Lupus or crohns. The first two seem to be the most likely at the moment.
It’s very hard not to sit and Google things trying to work out what is wrong and just sit and wait to see the specialist so you can slowly unravel the problem. At the moment I am helpless and cannot do anything but just deal with my symptoms, I’m on no medication so there’s no chance of improvement.
I hope writing about this experience will help other people dealing with a confusing and hard to diagnose disease. It’s an incredibly difficult thing to go through but something many have to.
I’ve just got to wait…