Hi all, not really sure what I’m Expecting on here but thought it’s worth a try. For 2 and a half years now I’ve been struggling with my body not feeling right at all, very fatigued and no energy, depressed for no reason, my walking has slowed right down compared to what it used to be (I’m only 39 and fit and healthy) experience awful stiffness, heaviness and tightness of limbs, my right arm doesn’t swing, I have awful nights where my partner says and has recorded thrashing around and have very intense shakes, and lots of other stuff. Saw a neurologist a year ago who completely dismissed my concerns about young onset Parkinson’s, told me I must be stressed, ordered an MRI to rule out anything else going on which came back clear and discharged with no answers or a way forward in finding out what the hell is happening to me and any type of treatment that could help me function with day to day stuff more easily. I wasn’t happy has made a federaland things are getting worse and my gp is referring me to a different hospital for a second opinion as they believe this is the early onset of Parkinson’s. I am Absolutely terrified of going and just being dismissed and not listened too after how the other neurologist spoke to me. Do you guys suffer with similar symptoms , I don’t have a tremor or anything.
Hi ppayne1986, thank you for posting to the forum. We’re really sorry to hear about how much you’ve been through and can completely understand how worried you must feel right now. Please know that you’re not alone.
We have lots of information on our website that can provide insight and guidance around symptoms as well as management of these which can help guide conversations with medical professionals. You can read more about this here: Health professionals and Parkinson's | Parkinson's UK
We also have a helpline where we can put you in touch with one of our Parkinson’s nurses who can offer their advice and guidance as you navigate through this process. It’s free to call and totally confidential: 0808 800 0303. It’s next open on Tuesday morning at 9am, or you can email [email protected].
We’re sure our lovely forum members will also share their experiences and advice, but please remember that we’re here for you whenever you need us.
Sending all our love,
The Parkinson’s UK Moderation Team 
@ppayne1986 My first neurologist did say something was wrong ordered a MRI talked vaguely about MSA and then nothing for ages. It was only when I got PALS (Patient Advice and Liaison Service.) involved did things start getting sorted out.
I hope that the new person you see offers a DaTscan if not ask for one, a DaTscan measures the density of dopamine transporters in the brain’s striatum, which is reduced in Parkinsonian syndromes.
Like some people I didn’t have any tremors at first(now have some at times) so not having tremor doesn’t mean anything either way.
I’m not so far on this journey so others on here who have been dealing with PD longer will be able to give you more advice
Johan
Hi. I had severe anxiety last year and had had a slight tremor in the right hand. The tremor worsened this year and thus went to my GP. The GP carried out a number of examinations on me and said it is potentially PD. He referred me to a neurologist back in January. For five weeks I waited until my wife called the given number for the movement disorder department at the hospital I was referred to. They explained that the waiting time for an appointment is/was 38 weeks, so I decided I had to go private. Found a PD neurologist and booked an appointment. The cost was £200.00 of which I thought was reasonable. This week I got diagnosed with PD by the neurologist. My point in this is not so much go private because that depends on the area you live in, but ensure the neurologist you see specialises in PD and movement disorders. Do your research about the neurologist you are referred to.
Thankyou for the advice and yes I will make a note to ask for a Datscan 
It’s completely understandable to feel anxious about seeing another neurologist after being dismissed. What you experienced isn’t uncommon, and your concerns are valid, especially with changes in movement, stiffness, and sleep disturbances. It can help to write down all your symptoms in detail, including when they started, how they’ve progressed, and any videos or recordings you have, so the new neurologist can see the pattern clearly. Going in with a structured timeline can make it harder for anyone to dismiss you and gives you a stronger voice in your care. Remember, it’s okay to ask for explanations, request tests, and be firm that you want to explore all possibilities; your health and experience matter.
Hello, I was diagnosed at the age of 39. After a year of tests, the neurologist couldn’t figure aut what was wrong with me. I told him that I’m sure that I have PD. He send me to neurologist specialist. It took him 5 minutes to diagnosed me. DatScan confirme it. Everybody has different symptoms. Don’t delay appointment, the worst thing is uncertainly. I hope you get a better diagnosis 
Martina
in my case, early on in my illness, my rest tremor was usually not showing up until about 10 minutes after i sat down or otherwise rested. the idiot (what i call my first neurologist) concluded that i did not have any meaningful rest tremor because he didn’t see much of it. (if the idiot had ever bothered to look at me in the waiting room when he called me into his office for an appointment, he would have seen a quite pronounced rest tremor, because the wait was generally more than 20 minutes.) i also told the idiot that i could meditate and suppress the tremor in my leg for a while as long as i didn’t move my legs. the idiot concluded i must have functional disorder (i.e., psychological) because he never read james parkinson’s book where he would have learned that a third of the patients that james parkinson interviewed could consciously suppress their tremor (at the price of continued concentration). basically, the idiot had a number of idiotic false beliefs about parkinson’s that he somehow came up with by being idiotic. i would bring the idiot a long and growing list of my parkinson’s symptoms to our roughly yearly appointments and for 6 years he never saw parkinson’s disease in my list of symptoms of parkinson’s. i think after seeing the idiot for three years is when i added “people tell me i look like i have parkinson’s” to my list of symptoms. when the idiot saw that on my list he briefly looked up at me and said “you don’t have parkinson’s” and then continued reading.
basically, in summary, neurologists can be complete total idiots. be persistent, and also ask for a datscan. (unfortunately i did not learn about datscans until even a 5-year old could diagnose me with parkinson’s.)
Hello @parkiejoe, we’re sorry it sounds like you had a really tough time getting diagnosed. We’re glad you advocated for yourself and presented your symptoms to a healthcare professional. We’ve got information on getting a diagnosis on our website to help support people with this process: https://www.parkinsons.org.uk/support/getting-a-diagnosis
We’re also here to talk if you ever need our support. Our helpline is a free and confidential service, and you can speak to our trained advisers, including specialist Parkinson’s nurses, who can provide information and advice: 0808 800 0303. We are available Monday to Friday 9am to 6pm, and Saturdays 10am to 1pm.
Take care
Parkinson’s UK Moderation Team
Hello ppayne.
I think your experience is very common. My GP tested me by waving his finger infront of my face saying touch my finger, touch your nose etc. I think this may be regarded as old fashioned, but google told me it was a test for Parkinsons. Months later at th hospital the neurologist held my arms and legs and felt for stiffness in my joints, I didn’t have any, and she assured me I did not have Parkinsons. She asked about my life generally, discovered my youngest child had recently left to go to university and told me to get a kitten - they can be very entertaining. I found later that she was an MS specialist. I saw her again 9 months later, I saw her face as she saw how I was walking across the room, and she booked a Datscan which confirmed Parkinsons.