hiya everybody, my names stevie and im 22. kinda shy about doing this but the past 2 an half years have been mad, it started when i went to see my doctor about my tremor who then sent me for a blood test which showed high liver enzymes so was refurred to the place at the hospital which deal with that part of the body (cant remember what its called lol) and they had me tested for a few things which came back all clear and then they all highly suspected wilsons disease so had the blood tests, the eye exam,ct scan and a liver biopsy. they came back all clear to, next place was to the neuro. this is where the real stess begain to start for me, he done the useal exam and got me to have a mri scan, like ive read on here many times the mri is to rule out other things which is exactly what he said to me. that came back all clear. then the next things i was tested for which was proberly the most stressfull wait so far was having genetic blood tests done to test for friedrichs ataxia, spineocellubellar ataxia(a few types of that was looked for but i cant remember what they was called sca1,sca2 something like that if i remember right) and fragile x syndrome (sorry if i spelt any of them wrong) the stress of that one really did get to me even tho the neuro said he highly doubts its any of them (but still lol) but they all came back clear, so went and saw him again on the 30th of november (7 days before my birthday ofcourse lol) he examed me again and said hes sending me to oxford to have a datscan and to see a psycoligist there too (which sounds fishy dont ya think? lol) my symptoms started when i was around 15 with tremor but thats got worse over time (when im stressed and anixous boy howdy lol) i stopped going out with mates when i was around 17/18 cause of shaking and stooped posture and felt extremely anixous about it getting noticed by them (which it was joked about at school by others) when i was 20 thats when i noticed my balance was kinda funky and kinda stiffish walking. wow i think ive wrote to much im sorry if i have just kinda kept typeing, felt good to good it off my chest tho an say it to someone :) why did i write this? i dont know i got so meny questions and would like to hear what any of you have got to say like does my story remind you of what you went thorgh when getting looked at and stuff like that, kinda worried im gonna get shunned away from everyone here lol sorry again if i wrote to much or the way i wrote it all annoyed anyone, i feel ive left out alot of important stuff but please feel free to ask any questions :) im not a expert on parkinsons (which i really feel i have and i think my doc suspects it to but with my age hes just playing the cards close to his chest what with him the one suggesting the datscan an that they dont hand them out willingly from what ive read) ahh im rambleing again lol im sorry if i have bord anyone. thanks for readding :) scared im gonna get my head bit off for something lol
Hello and welcome. You have had a miserable time.I take it that you are waiting for the datscan now? What first made you read this site, was it because someone in your family has Parkinsons? I think they quite often refer people to a psychologist to help.
hi stevie,welcome to the forum ,im ali ,im 42 been dx with pd for 11 years,hope to see u around the forum x
Wow, a lot to cope with at 22, bless you.
I hope you find out what is causing your symptoms and yes, it does sound very like Parkinson's.
Don't ever worry about how much you write or indeed what you write, you are among friends here, we do not judge.
You are very welcome
A big welcome to the forum. Took you courage I know to write about yourself and very brave been so young. There is good advice on here and many people willing to help . Hope we hear more from you all the best
thank you everyone, it honestly means alot to me :) polly what made me come across this site was after wilsons disease was ruled out i done some google researching regarding things like it and even tho i already knew pd was simalr to it i think i pushed it to the back of my mind till wilsons was ruled out, everyone thinks my grandad has pd but ive only ever met him twice in my life cause that side of the family dont have the best relationship to say the least lol and he is reluctant to tell anyone whats wrong with him. the thing with the neruo getting me to see a psychologist in oxford along with the datscan there is what makes me think the neruo knows more then he is willing to say at the present time. yea gotta wait a month to two months for the datscan appointment which should be fun what with christmas an new year lol again thank you all for taking the time to read my rambleing it really means alot :D
Hello and welcome to the forum Stevie. What a journey you've had. There is somebody using the site that was diagnosed when he was 8 I think, so age is immaterial I think, though it does seem that some doctors still consider that PD is for us oldies!!! You shouldn't worry about writing too much, we all need to open up sometimes and when we do on the forum, you can bet that the responses come thick n fast. Good luck with your scan!
hello glenchass and thank you :) i have seen a few of his post, he was one of the decideing factors of me posting here cause it dident make me feel alone regarding age. if i see him around il be sure to thank him :) again thanks to everyone who is replying!
Hi Stevie I'm new to the forum too! Yes it helps to put your worries and concerns in print occassionally it sort of validates them; dont think anyone is going to give you a hard time for long posts, its why were all here I guess to talk with others who understand what we are experiencing. I am not as young as you but was dx with early onset PD 4 years ago, and can sympathise with the embarrassment issues I needed to get over eating in public due to my tremour, but decided ultimately to not let PD or the ignorant rule my life! Easier said than done I guess but dont hide yourself away get as much enjoyment as you can. Good luck with the Dat scan etc.
Hi guitar321, I was attracted to your post because my husband is involved in a guitar shop and they are all over the place here!! I'm on forum as a carer (my old mum has PD). I am sure there are lots of younger people with PD or similar and hope you find some to share with. You don't mention your family. Are they supportive?
All best wishes, Choogler
Hi Stevie great that you had the courage to join the forum. I can`t believe what you have gone through you must be fed up of tests!I was dx with a dat scan just over 2 years ago and even though it was shocking it was also a relief.I try not to avoid going out like my husband says "nobody really cares if you stumble & shake" if they say anything just tell them you have pd and it stops them in there tracks. i hope you get the results soon so you know whats the cause of your problems, at least they are rulling things out!
As for coping with pd you find ways:- I always order food in restaurants thats easy to eat i.e. curry, casseroles, risotto that doesn`t invole cutting meat. I also have cards/money at hand when shopping etc. I also choose where to sit in pubs so as not to bring attention to myself (not easy when your 5`8" without heels.
Don`t worry about going on to much it is a big relief to get it off your chest
and we allknow how you are feeling,
Chris (Big C)