Is it PD


#1

Hi guys,

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


#2

Oh no i just read that back to myself so many typos etc. Sorry guys hope you could makes sense of it... i am tired and my keyboards is naff lol :)


#3

I also forgot to add my breathing is naff after any exercise like really naff...not the sort of puffing you would expect from a 28 years old none smoker... also i sweat alot. Like i walk to the corner shop and i am sweaty this makes me very paranoid. Also i regularly have an uncontrollable desire to keep moving my legs especially in bed. I dont know why the are just uncomfortable otherwise. As you can see from my symptoms i dont much like bed these days... and that is wy i am here at 2.40am telling you my medical history. Oh god i am so sorry :(


#4

Good morning Little Rose welcome to the forum.

i`m not a doctor so I cannot possibly diagnose what is wrong with you but what I can say is that something is wrong and absolutely the best advice would be to go to see your GP.  If you can make a list of symptoms, perhaps in the order of worst / most worrying, you could give it to him and so save time.  That would leave more of your appointment for him to talk to you.

The uncontrollable desire to move your legs sounds like restless legs syndrome which a lot of us have.  Not everyone but  a good many of us find that it disappears if we have a glass of tonic water each day.  Some add gin, some orange juice and some add other tipples but whatever you add only makes it taste nicer and doesn`t alter the effect.  Give it a go, you`ve nothing to lose and you might be one of us who finds it works.

So get that GP`s appointment and start writing your list today.

Best wishes

Hattie


#5

 hello little Rose

                           It could be PD yes, but the bottom line is a go to your GP and get it sorted.lay you cards on the table

                         All the best to you Rose........Billywhizz

 


#6

 

hi little rose

I Have too Agree with the comments so far.

Make a list of your symptoms however small you think they are, And do go back too your Gp.

I ignored a tremor for 15yrs, always dismissed it as just that a shake and got on with things, but life became intolerable in work and out of it i'd slowed down and i was always dead tired, physically and mentally , i wasn't sleeping as much as i was even though i was tired, in bed moving i likened too horizontal climbing and restless, and when i did sleep i had terrible nightmares although i've learnt too put it too one side it is always there in the back ground.

I went too the Gp's. but have never been one too use it in the past.

the first question was how's your mood??

then blood tests of all types, nothing showed on them other than low vitamin D.

More elimination and finally the Neuro with examination, walking.movement ect, who said i had lots of problems and at the core Prob PD.

Mri and  nerve conduction tests all standard fare.

and then 'Datscan' and diagnosis.

No quick answers and took the best part of a year.I felt too get anywhere i had too be persistent at the Gp too push it along, if you feel you arn't getting anywhere then see another till you do.

best of luck.

 


#7

Thank you all so much for your replies they are brilliant and helpful :) i know you are not doctors and it is only guidance but it is nice to talk to people who have the same symptoms. I have felt like i am going mad. My parents and friends know i am unwell but i have not told them how bad i have become as i don't want to upset them :( it feels good just to tell someone :) thank you.

That is a brill idea. I shall start working on a list. As you can see i forget things and remember after which is why i made several posts :( at least i won't forget when i get there as it will all be written down :) i feel more confident now about going to the doc as others have said i am right to do so :) i just feel daft as i am not even 30 yet but i just can't ignore it anymore really.

Hattie i will try the tonic water as it sounds promising if a few of you drink it.... got to be worth a try. Restless legs does sound like something i would expect it to be called... they are definitely restless!!

Sea angler it is nice to know others ignore it to. I keep telling myself my legs shake as they are just tired from being busy in the day lol :) but then i have an honest chat with myself about how i have always been busy and never shaked before plus it happens when i haven't done a thing lol :/ coupled with everything else you are right it is becoming intolerable :(

It is nice to know what happens during diagnosis. I feel a little easier about what i could expect. Well my GP is a bit of a doughnut so i shall focus on just getting to him first :/

I am so glad you all replied and took the time to read my story. I feel better hearing your advice and will take it on board. I will make a GP appointment on Monday and will buy some tonic water tomorrow when i finish work. Thank you so much for listening to. For this first time in a long time i actually feel normal and not weird :)


#8

Hi Little Rose,

There are several symptoms that you have mentioned that come with PD ( I call it the B****)  I was dx in June 2013 at stage 2 I am now at stage 2.5 I agree with the others defo go back to your GP if he laughs at you just remind him that Michael J Fox was dx at 29. And inform him that there is Teenage onset PD and early onset PD which is about 40 year old normal onset starts at around 50, if he still does not listen the report him to the medical council. You must see a Neuro ASAP if you are in the UK you can be referred on the fast track which will have you see a neuro within 2 weeks. And you can insist you be referred the youngest person ever dx was only 8 years old. There are effective meds you can take we still have to pay for our drugs unless we are so disabled that we cannot look after ourselves. you can buy a prepayment card via your local pharmacy for around £12 per month via direct debit for 10 months.

Please let me know how you get on I will do my best to help you,

Best wishes BB xx


#9

dont expect fast track as 2 weeks , i was fast tracked and still had to wait 10 weeks .and that was despite numerous phonecalls from me and gp.think it is v dependant on where you live

 


#10

as i understand it it's supposed to be 2 weeks i was actually seen 10 days later.

 

bb 


#11

Yes it's supposed to be but in reality it's not


#12

As I keep saying I must be lucky because I live in Lincoln I would create merry hell if a NHS set policy was not adhered to, considering i am originally from London I would not go back there to live if I was paid.

when I was waiting for a date for my shoulder surgery i checked with the local primary care trust and was told 80% of patients should get the op's they need within 18 weeks from the day they are referred for their op's.

they told me  in Jan my op date was end of July three very heated phone calls later got it brought forward to just within the time slot when someone from Lincoln county called me to tell me I was correct and I told them I know because I checked. I suffer fools and incompetence badly & will never tolerate it under any grounds. 

 

BB 


#13

Hi Little Rose,

I'm relatively young (34) and was diagnosed last year. The advice given previously is excellent. I just wanted to add be prepared to fight a bit - I had to see 3 different GPs to get my referral to a Neuro, which took a long time. The first GP I went to about my symptoms was very dismissive about it, and encouraged me not to worry about it, which I delayed my dx by quite a while. I hope you find an answer.

I'm in London (was elsewhere for dx), and the support I now get here is great!

Best,

T


#14

Hi Little Rose,

My doctor is not like this but  my experience of others with various forums   - I like to think it is the minority of GP's  -  ,  is that the patient is  either too young  (20's)   neurotic mum (30.'s)  , too old  (,its all old age)  too  sensitive or anything thing they can say other than actual listen to what the patient is telling.  What you have described says a great deal for your determination to keep going but I would have thought was quite enough to warrant a referral to some sort of specialist, probably a neurologist.  If necessary, change the doctor you see or even the GP surgery altogether

It might help to keep a medical  diary for a week or more so that the extent  and persistence of your various symptoms are crystal clear for the hard of listening GP.  fI you are the sort of person who just keeps getting on with it so to speak you may surprise yourself with how much you have to write and you won't be easily fobbed off when it is all down in black and white. 

 

Best wishes,