Hi everyone, Im sorry Ive not been on here for ages, I did try and post something a couple of times and Id write a big long message but then the internet connection would play up or something and Id lose the whole bloody thing and couldnt do it again! so 3rd time lucky, on my laptop today so should be ok. Where to start?! To people who dont know me, Im 28 and havent been diagnosed, but have a lot of the symptoms of PD and have been ill a long time. Its been a rollercoaster over the last few months (I suppose it always is!) Ive mostly been trying my best to make the most of my life and do everything I can while Im able, Ive got back into modelling and have even been signed to an agency! =) Ive been single since september and have finally focused on me and what makes me happy and have been doing all sorts of activities (and often overdoing it, woops!) Ive had my whole arm tattooed and I love it! And Ive managed to do some drawing and painting Im actually pleased with despite the tremor so Ill keep trying with that.
In regards to my health, I waited 6 months between neuro appointments and he said I dont have PD but I wasnt too convinced cos he couldnt necessarily rule it out with only an MRI and blood test could he? Im being referred to a movement disorder specialist in London to look into things more so at least I havent been totally dismissed. Theres also a chance the chickenpox I had again last year may have attacked my nervous system. My tremor has remained the same generally, sometimes things can set it off though but Im usually ok at dealing with it. Still have bad stiffness and pain, Im always pulling my calf muscles, and still get spasms and occasional partial paralysis and having trouble with excessive weight loss. Ive had trouble with my hearing for a long time and last week was diagnosed with an auditory processing disorder, do any of you have anything like that? Im not sure if Ive always had it or developed it as an adult as my memory is so bad. When I was at the hospital appt there was a Parkinsons charity stall there so I went over to do the tombola hehe, and got chatting and there were a few people there with Parkinsons who all thought it sounded like I have PD an that I should really push for more tests, im very confused about everything!
But the most annoying thing is on saturday night, I suddenly came over very funny and thought my drink may have been spiked (I dont drink alcohol) as I was hit with bad nausea, was lightheaded and dizzy, had visual disturbance and could hardly see out of my right eye, couldnt walk straight and had slurred speech, but I just went to bed hoping to sleep it off. But when I finally got up sunday and tried to talk to my mum I realised I couldnt remember how to speak! So went to A&E and straight away they thought Id had a stroke! Luckily a CT scan showed no major bleeds or clots but my brain was obviously disrupted somehow, and I had a temperature and palpitations so was kept in for observation, stayed in for 3 nights in the end, Ive started saying a few quiet words today, finally! Still a bit unclear as to what is going on, all I know is I have expressive dysphasia and will be seeing a few different docs, hopefully soon!
So yeah, lots of ups and downs but Ive generally been doing well and am managing to be positive most of the time which is great, and Ive even had some people say Ive inspired them which is lovely and I hope something I can continue to do! I hope everyone on here is doing ok, and hi to everyone Ive not 'met' before. Sorry, thats a bit long!