Hello


#1

Hello all. Following problems with my right arm over a number of years involving many visits to my GP, Physiotherapists and a Musculoskeletal Consultant I finally got referred to a Neurologist (I’d been contending for some time that there was a nerve problem of some type). He tested my reflexes etc. & got me to draw a spiral (mine was better than his) & write a line of text (ok my writing was small but he should have given me a bigger piece of paper). At the end of his examinations he announced that I had Parkinsons (he seemed rather pleased about this fact, strange) & prescribed me 2mg of Ropinrole daily to be increased to 4mg (he didn’t say when, my choice?) & said I’ll see you in 6 months have a look at this website for information about Parkinsons (helpful?).

I hadn’t quite accepted his diagnosis and have since discovered that there is a scan available (DATscan?) that would confirm the diagnosis, also I’ve been taking the Ropinrole now for 2 weeks without any affect except a little tiredness. I went to see my GP yesterday to ask about a second opinion & the possibility of having this scan. He carried out his own examination of my joints and confirmed he could feel the ‘cogwheel’ rigidity in my right arm with a slight stiffness in my left arm, my legs were fine (kind of got the impression he didn’t quite agree with the Neurologists more severe assessment). His advice was to give the medication more time to work, up the dose to 4mg in 2 weeks then go back and see him after.

I’d welcome anyone’s input/advice about my current situation, I think I’m at about 70% sure that I’ve got the disease but my partner still hasn’t accepted it (obviously she’d really rather I didn’t have it!). Do I push harder for a second opinion/DATscan? I’m a little up in the air at the moment as you can probably tell.

I’ll stop waffling now, thanks for listening.


#2

Hi Roy_S

It is difficult to accept the diagnosis but I wanted to know for sure and had the Datscan. The neurologist could show me on the computer screen where the dopamine was missing. I was convinced. Pretending its not there is no help in going forward.

Good luck

Knine (Audrey)


#3

Thanks Audrey. I’ll push for the scan next time I see my GP.


#4

Hi Roy_S,
I’m not sure about your symptoms as everyone is different but rigidity in the joints and smaller writing can be signs of PD (as well as other ailments).
I’m on Ropinerol for the last 18 months and i will say that 2/4mgs is the minimum dosage. It takes a while to have any effect and i find mildly helps rigidity but makes me feel ‘normal’. Im now on 12mgs having increased slowly.
I believe a DAT scan can give you a better idea of what you have. Good luck


#5

Thanks. I only wrote small because there wasn’t a lot of room left on the paper once we’d both drawn our spirals :rofl:

Over what length of time did your ropinerol dose increase from 2 to 12mg?


#6

Hi Roy,
I like to save paper by writing small too! :grin:
I started Ropinerol (dopamine agonist) in November 2016 and have slowly increased by 2mgs over that time. I have taken this decision to go slowly with my Pd nurse and consultant. Im probably undermedicated but i would rather be in control of what im taking as ive a few years ahead of me. (Hopefully). I have heard that once on Levadopa, its effectiveness is about 5 years. That may be different for everyone. Like everything about this condition, its individual.


#7

Sounds like good advice and I have actually noticed my right arm being a little easier to move this morning when shaving and showering. Thanks.


#8

Hope you don’t mind me picking up on something else you said? You said the ropinerol makes you feel ‘normal’, so did you feel poorly before you were on it?


#9

You know ive got to be honest, im not entirely sure. I think i felt a bit out of control. I think as i increase every couple of months or just before i increase the meds, i get that feeling of not being in control.
Its also good to be aware that Ropinerol has some nasty side effects like OCD, secrecy around gambling etc. So make sure someone is keeping an eye on you. My symptoms are mainly stiffness and slowness down my right side.


#10

Hi @Roy_S,

A warm welcome to the forum.

Considering the information that you’ve shared, you may want to ask for a second opinion by going to your GP and asking for a referral to another consultant/hospital. It may be the way the diagnosis was delivered that is making it difficult for you to understand what the impact is.

Regarding the DATScan, they are becoming a much more widely used diagnostic tool for Parkinson’s but they do have their limitations, most clinicians that we speak to you are using them in conjunction with other diagnostic methods and not as the sole or definitive tool for diagnosis. They are also using them to rule out other reason for the patient’s symptoms.

Does that all make sense to you? Please let me know if there’s anything else that I help you with.

Best wishes,
Reah


#11

Thanks both. My partner was quite amused when the consultant said the meds may make me impulsive, she said ‘that’ll be a first!’ :blush:

I actually feel fine, just this dodgy arm that’s been like it for 3 or so years, will definitely push for a second opinion when I next see my gp.


#12

Hi @Roy_S,

Your partner definitely has a great sense of humour! :blush:

I’m glad you’ve decided to get a second opinion - feel free to keep us posted on this.

Best wishes,
Reah


#13

Quick update. Saw the PD nurse the other week, she put me through a few tests (writing again & dexterity in the fingers) & she said I’ll give you a second opinion you’ve got it. I was ready for this as the meds have been helping, my right arm feels like it belongs to me again & I’ve been able to do stuff I was struggling with before.Only on 4mg of Ropinirole at the moment & the nurse said if you’re happy at that dosage just stick to it, so that’s my intention if things don’t worsen. I see the neurologist again in October, but got a couple of holidays to enjoy before then.


#14

Hi Roy,
That sounds good. I’m glad you’re getting a positive response from the meds. Slowly does it is the way forward.
I’ve got my appointment next week for a review. Got alor more stiffness in my hand but feel i have plenty of energy.


#15

Thanks & good luck with the review.