Not sure what I have!


#1

Hello everyone,  I'm new on here and just want to share my story so far.

I'm a 43 yr young man and this past few months I have had very restless legs whenever I sit down or lie down. My left shoulder , neck and back are always sore and rigid like. My left leg doesn't like to lift up off the ground without hurting. My 2 big toes are nearly always pointing upwards at rest and I have to purposely move them downwards. 

My doc has done blood tests twice to try and find a reason for my symptoms but nothing is out Of The ordinary. I'm back tomorrow with a different doc to see what she suggests 

From looking on here the symptoms are pointing at pd but from what I read on here it could be a long process before I know either way 


#2

Hi busman,

your symptoms sound very similar to mine. I have just been recently diagnosed but was pushed from pillar to post for nearly a year. I recently started a new job which came with private health care and was diagnosed within a month. If you can afford it I would seriously consider a consultation with a neurologist. Think its about £250 but when i seen mine he diagnosed me within 10 mins but wanted to do a dat scan to confirm. 

prior to the private route i spent s small fortune on chiropractor, massages, osteopath and accupuncture. The NHS fobbed me off with pain killers and neck stretching exercises from youtube....


#3

Thx wildrover

I forgot to mention that at my first visit to the doc he prescribed me ropinirole which I Am still on,  2mg  at night. They worked with the restless legs but now I feel as if I need more as I can feel them going again before I take the tablet at night.

Oh and the tiredness is just overwhelming at times.  But hopefully this appointment tomorrow will be more fruitful in regards finding out what is wrong.


#4

Yes fatigue is a massive thing for me, not sure how i am going to fix that though. 


#5

Hi busman

Your symptoms sound familiar to me too. I'd certainly ask for a neurological appointment and see how long  the wait is. I believe it's very different depending where you live. I went privately ;(£200.00) and got a quick diagnosis later backed up by a dat scan.  Fatigue is a wretched problem, I've found no answer to that one. 

good luck 

FB 


#6

Ps.drugs, sinemet, has helped a lot with other symptoms so not all gloom! 


#7

Well had apt today with doc and she reckons that there is no link with all the symptoms I have. The muscle pains are caused by some sort of repetitive injury at work due to the fact they are on the same side. Anti inflammitorys will cure that. Staying in the ropinirole along with stretching will aid the restless legs which will help my sleeping which in turn will sort out my fatigue which then will improve my mood. 

Well here goes another few months and you never know maybe I'll be a different man then 


#8

Wow!!! I suppose you have to go with what she says and 6 months ago I would have done exactly as she says. But knowing what I know now i may have approached it differently. Really hope she is right mate. Give it a few months and if your still the same get back to the docs and demand a neurologist referal...


#9

Will do wildrover , it all sounds good on paper lol but all I can do is wait ... After all what is a few months lol


#10

Hi Busman,

I'm confused as to why you were prescribed Ropinerol. It's a dopamine agonist and has alot of side effects. I'm taking it and tolerate it well. Just be aware, as I am, that it can cause obsessive behaviour. I hope you feel better though and get good results from your treatment. 


#11

It is used for restless legs too, without necessarily being a Parkinsons symptom so I guess that's why. I do hope it turns out well for you busman.   Waiting for a diagnosis is miserable. FB. 


#12

Hi FB,

Yes just read the 'restless legs' symptom after my post. Sorry. Still be watchful of effects though.

I agree waiting for proper diagnosis is awful. Hopefully you will find out soon, Busman. 


#13

Thx for the comments everyone...  It's going to be interesting to say the least how things will turn out over the next few months 


#14

Just a wee update on things. Another doc in the practice has now referred me to the neurology department in the hospital and marked it as urgent. 

The ropinirole , I think , is making me suddenly fall asleep for brief periods during the day which is making work now too dangerous so I have to take time off. The Doc did say that he would rather let the neurologist adjust or change my meds as he will have a better idea of what is going on. 

I'm also finding that I Am becoming more used to the ropinirole as I find it wearing off now in the evening again 

Here's hoping for a quick appointment  !!!! 


#15

Good to hear from you Busman.  I’m really glad you’ve seen a more “switched on” GP and are now on the fast track to a neurological assessment. I do hope the wait won’t be long.  Good luck!  FB 


#16

As I was diagnosed using private health insurance I was “fast tracked” for an NHS consultation. Finally got the appointment after chasing upteen times for the 11th november. This took over 2 months from the original URGENT referral. Just wondering if this is normal or just my area ? Hopefully I can now get some meds that will ease my symptoms. I think the NHS system worries me more than the actual disease!!


#17

I was walking with a limp and people were asking why? I couldn’t answer because I had no pain so I went to my GP who told me to walk up and down the surgery and said I can’t see a limp do you think you’ve had a stroke??? errrrr aren’t you the doctor I said? So he said I could refer you to a neurologist but that would be a waste of time, so after a year of toing and froing to the doctors and being referred to a specialist who ended up being a physiotherapist I finally got referred to a neurologist who within half an hour of asking me questions and getting me to do movement tests said I had onset PD. When I saw that doctor next I reminded him of what he said and the look on his face was a picture lol! Anyway my point is that how can a GP prescribe a Parkinsons drug when he’s saying it’s not parkinsons? He’s not a qualified neurologist so cannot say yes you have PD or no you haven’t surely?


#18

Hihi


#19

Hi I think it depends on Dr. I was very lucky in a way in that my own (now retired Dr) diagnosed PD in me when I showed him how strangely my left hand moved/worked. He immediately said PD and put me on medication while waiting for neurologist appointment, saying, there’s no point waiting. I asked if he was sure and he said “I’ve seen a lot of PD”. I didn’t realise just how lucky I had been until after he had retired and I saw another GP, and when reading other peoples experiences on here. A few months later neurologist confirmed his diagnosis. D