Firstly i would like to say a big hi to you all. This forum is great and i have ready many of your storeys and advice to each other and think it is remarkable how supportive everyone is :) i would be kind if anyone could read my story and tell me if it sounds like possible PD. It is quite long sorry :'(
I have been unwell for a while i would say a few years and have become steadily more unwell and i am at the point where i don't know what i am more fed up of the physical symptoms or the frustrations of not being me any more and not knowing why :( i saw a neurologist who basically said it isn't MS.Now as nice as that was to hear it didn't really help as he basically left it at that. I had a recent stay in hospital after yet another fall and i met a woman on the ward with PD. It was like looking at me but in a few years it was scary. She told me about how she was in the beginning etc and i thought OMG that is me. I didn't say anything to anyone as i always thought PD was something you go when you were elderly.... but i recently discovered that isn't the case and there is young onset PD. I am too scared to say anything to my doctor incase he laugh me out of the room. Please could somebody tell me what you think of my symptoms. Does it sound like possible YOPD. I am 28?
In the beginning just felt tired all the time. Like my brain wanted to get going but my body wasn't quite p for it. I would also get depressed but i assumed it was down to the lack of energy.
This progressed to issues with my left leg. It kind of doesn't always follow the rest of my body. If it come come apart from my body i swear i would have left it behind shopping somewhere still on the spot where it decided it wanted to go no further. When it does decide it want to come with me....it decides it is going to get under my other leg and trip me up completely instead. While i am busy trying to negotiate walking with both legs coming with me i have started tensing when i walk. Just kinda plodding around the house it doesn't seem to happen much but when i am walking about outside it happens. I tense my whole body. The only way i can explain it is that sort of uncontrollable uncomfy tensing you do when you are really cold and shivering. I have also noticed i put my hand in my pockets walking. I am not really sure why i do this other than my arms just don't feel in the right place other wise. I also lean towards the floor which is worse when i run... so i don't do it anymore. I think this might be mostly why i fall :(
Also my legs have begun to feel more heavy. They have not gotten bigger i just cant lift them so easy anymore.This is worse it bed. I have not gotten a smaller thinner duvet for my bed as i cant handle a normal duvet it feels to heavy for my already heavy legs. I feel embarrassed when i stay out at friends of family asking to remove the duvet as it is too heavy, They think i am weird :(moving around in bed is hard enough without a duvet. On the note of bed. I either cant stay awake and am flat out by 8pm or i could quite happily be awake ALL night no issues. When i do sleep and get all lovely and comfy.... bam.... my left leg shakes. It feels like it shakes a lot but i think it is because it make me jump A LOT so not actually sure how shaky the shake it but it wakes me up with a fright. It only really happened in my left leg and only in my sleep but now it is also my right leg and not also while i am relaxing watching tv. My hand and feet are always hot and i wash them in cold water all the time.... again people think i am odd for doing this but it is the only way to stop the burning.
My arms apart from being weaker have been otherwise fine.... until the last few days... where i actually struggled to take the bag off my earring. This scared me. I can cope with leg issues... but my arms? :(
Now the bit that really upsets me is the feeling i am not me any more. I used to be so active. I would decide i would get up and go do something and no i don't. Well i decide i am going to get up and do something.... but then my body is like nah lets just stay here and done nothing it is too tired. I just cant get going :( i know my life is passing by with i literally physically cant seem to help it. I save all my energy for stuff i have to do like go to work and then that is it :( I also don't seem to care. Not in a way that i am not bothered about stuff but in a way that i just don't seem to be bothered anymore. I know with all this i am probably depressed but when i feel happy i just don't care. I don't even know what i mean but i just don't care about anything. I had all these dreams and wants and now i don't care about them it takes something massive for me to be excited... even then it doesn't last before i don't care again. I know i should care and i want to but i cant :(
I have switched from attending university physically to distance learning as i just cant seem to get going. Before i am ready to go it would be home time lol :)
Now for the bit i am most scared about is something that has only started very recently...when i am really tired and stressed (and only during these times) i see insects... now i know they are not really there as it is things like cockroaches and we don't have the in the UK really/ I actually only recently discovered PD patients can have hallucinations.
I have chronic constipation.
Does it sound like PD? Sorry for the big massive essay. I feel silly saying all this to the doctor. If it sounds like possible PD what do you guys do to manage symptoms other than meds. Is there anything that helps naturally. Exercise, yoga etc stuff like that? Thank you for reading and i look forward to hearing from you,
Little Rose :) xxx