Sorry, I disappeared for a while!


#1

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!

Suzy


#2

Good to hear from you Suzy . Sorry you have not got a diagnosis yet . Hopefully the movement specialist will be helpful . Glad you have been able to do some modelling and painting . 


#3

Thank you Maddison, yeah fingers crossed Ill get somewhere! Hope you are well =)


#4

 

I did wonder how you were doing Suzy and if you were ok, Glad you've achieved a few things for yourself I'm hoping you get the answer's you deserve soon, keep well !! young lady.


#5

Thank you Sea angler, Ive generally been ok but as you know, things are always up and down! Are you doing ok?


#6

 

I've been very tired running on empty for a month or so, but i hope when the sun & summer eventually arrives I'll bloom again in the sunshine cool


#7

Fingers crossed!


#8

Welcome back your symptoms sound like PD to me and I agree you need to push for a dx although i am older than you I got mine in three months and I believe it is better to know rather than wonder. Be strong sweetheart and start as you mean to carry on get pushy.

 

BB xx


#9

Suzynola, on a total side issue I feel compelled to say your picture is truly stunning.


#10

Hi Suzy,

I was thinking of you recently and glad you can get on with life and certainly pleased for you that you are painting!

All the best for now.

Casie


#11
Thanks Betty Blue, ive never been able to get definitive answers about my health problems, it doesnt help im still young and docs seem to find it hard to believe me. Im not great at being pushy but I do say when im not happy with their explanation, or lack of. I think you were lucky to get a diagnosis in three months! Aww thanks very much Bowie, its a shame we can't all share photos on here. Thank you Casie, the painting doesn't always go to well but ive managed to do a few bits im happy with! Ive thought about how you were all doing too but when I did remember to come on here my message would get lost! Hope you are ok x

#12

big grinbig grinbig grin

  Well you have certainly cheered these three guys up,the builders are completing a few snags on the new kitchen and when the 21yr old polish plunber  spotted your picture he said,and I QUOTE, WOWW SHE IIS LOOKING GOOD SHE VERY VERY DESIRE, OH YES, I  NEED HER PHONE, well do I NEED  TO SAY MORE SUZY, THEY have given you  the nick name SEXY SUZY, so there you are sweetpea, that will have cheered you up, it has me as I was thinking of you yesterday and what had become of you, great to have you back old,, well young fiend, i will contact later with news not all good..I  know you are not a fiend by the way this TOPLAP is wineeeeeeeeeenedene me up again, iff yit corntinyws its  off to mars with it

                                                            Greatest Bestest of goodlyness and wish

                                              FEDEX  GREAT TO HAVE YOOO, bu...r SEXY...behave or,, sorry sorryy

                                  BFN


#13
Hehe hi Fed. Sorry you havent been always doing so good, as you can see, ive been up and down, only managed to get up to go to doctors today and went straight back to bed, I cant even see straight!

#14

I hope you feel more stable very soon!  You have been a big help to me and i have appreciated it.  And Fed is right - you look great!


#15
Thanks very much Doglover, I can speak better now but had another funny moment yesterday so Im feeling pretty bad again today, I am so confused and frustrated its ridiculous! I cant make a simple decision so Ive just laid in bed all day being confused and uncomfortable! Hope you are doing ok x

#16

I'm sorry to read this Suzynola - how are you feeling today?  A lot brighter and more active I hope, and perhaps less afraid because you must feel like that at times.  I am much of a muchness - internal tremors (head mainly) still banging away!  I hope you have a better day xx


#17
Hiya, I think im doing better thanks but Im not sure! Its really hard to tell, ive been relying on my mum to tell me if im ok or not! Im going to attempt to go to my local shops today so as long as i dont get too dizzy or confused it should do me some good, staying in bed really isnt good for my body but thats what my brain needs! Ive been a bit scared sometimes but mostly just frustrated and fed up, a feeling im sure everyone on here can relate to! Ah internal tremors are so annoying, even harder to explain to others too when you can't show them! Take care x

#18

You are spot on about the internal tremors!  I've tried to explain them to non-PD people but with little success.  I just say it's like a feeling of shock that never subsides or a shaking feeling you get after waking up from a bad dream that doesn't disappear.  Hope you get to the local shops today - take a walking stick with you.  Although my walking is fine, my balance is poor so I keep a stick with me at all times for when I stop - they are pretty, flowery ones and I have stuck some diamantes on them to liven them up!  You then think of it like a piece of jewellery xx


#19

you can get some great sticks on amazon and eBay i don't do plain i do funky animal print as well as flowers i have 4 so i can colour code x


#20
Hehe way ahead of you, i have a fold up floral one! =) ive got crutches at home too but i only really use them when spasms pull my leg muscles too bad. My wrists get too sore using a stick or crutches though! Hehe I love that you colour code your sticks and outfits BB, good for you! I love dressing up. Yeah i think its impossible to explain how we feel to anyone who doesnt have the same symptoms but I dont expect anyone to fully understand, i always say their support is all i need, but obviously its good to talk to others who do truly understand!