Getting a diagnosis

Just want to get some other people’s perspective on getting diagnosed. I had my first appointment yesterday and the consultant said he wants to keep an open mind at this point and ordered some blood tests and a review of symptoms in 6 months. He wants to rule out Wilson’s disease but he said it is very rare. He observed slight right sided stiffness and reduced right arm swing . My tremor was not very prominent during my appointment. My real question is how long did it take for a diagnosis, I know some people will get a defined answer from there first visit and others have a longer wait . Just feeling anxious as I do have lots of symptoms.

Hi @Jo1975, :wave:t5:

I’m sorry to hear that you’ve been feeling anxious whilst waiting on a diagnosis.

The time it takes to get a diagnosis can vary from person to person. Some people may receive a diagnosis of Parkinson’s quite quickly, but for others it may be a long process. This can be due to a number of things, including your medical history, your age and what symptoms you have.

Your specialist may wish to rule out other causes of your symptoms first and see how you respond to treatment. This may take some time as there is currently no definitive test for Parkinson’s.

If you’re waiting for a diagnosis and have any questions, you can call our helpline on 0808 800 0303. I’m sure you’ll also hear from some of our members with their own personal experiences and words of encouragement; however, I hope the information I’ve shared can help to ease your anxieties. :blue_heart:

Best wishes,

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Hi @Reah , thanks for taking the time to reply . I think my consultants laid back attitude threw me a little . I understand everyone is different, with different symptoms and different drs have different approaches. I dont want to waste the NHS resources or time but I know my symptoms are real and not just in my head . From reading peoples posts on here I now see that it can be a long road to diagnosis. Take care Jo.

Hi jo1975

It was over 10 years ago that a very obnoxious Dr said to me during an examination for feeling tired and weak all the time I didn’t have PD he was quite rude about it. Over the next 5 years leading up to my retirement I was asked by various number of people from all walks of life, had I been tested for PD.
It was just by chance I was selling my motorhome a couple came to look at it. After they had looked the lady asked did I have PD?. She informed my she was the head of neurology at Lincoln NHS ?
She said get it checked out but she was 99% certain I had it. After they had gone I checked her out and she was who she said.
I went to my Dr and he referred my to the hospital due to Covid it was nearly 20 months before I was able to see a neurologist who diagnosed Pb straight away. I have now been undergoing treatment for just over a year and still getting my head around it.
I find the forum very interesting and informative reading other people’s experiences are a great help understanding what others in the same position are going through.
Hopefully you will also find help you need
Best wishes Davesan

I decided mt husband might have Parkinsons several years ago when we were on holiday in our VW camervan in Spain and he started struggling to get dressed, The Neurologist we were sent to after returning home was to my mind useless and didn’t order any tests until the second time we saw him 6 months later. My husband then got transferred to another Neurologist at a hospital a lot closer to our home. This neurologist actually said my husband has Parkinsons and started him on medication which didn’t work very well so the Neurologist then said he had parkinsonism, the latest letter my husband has had said he has parkinsons plus. so they seem to have changed the diagnosis again unless they have just changed what it is called. Don’t worry about the diagnosis what it is called doesn’t matter as long as the medication helps.

Hi @Davesan , thanks for replying. What a weird way to find out you might have Parkinsons but also lucky for you to meet that Dr by chance. I agree this forum is incerhelpful even if you just read others experience. I wish you well for the future , have a great Christmas Jo

Hi @k800mer , I am glad your husband got a diagnosis. I think a lot of people have had negative experiences and have had to change Drs to get the help they need . Just feel like im in limbo for 6 months , not knowing is a little frustrating . Wishing you a happy Christmas Jo.

A diagnosis is good but it feels like he has had thee different diagnosis although all a form of Parkinsons. Funny thing, my husbands doctor retired recently and today he had a letter to say his new doctor is called Parkinson. Ironic

Received a letter from consultant, he believes symptoms may be early signs of Parkinsonism and has suggested my sleep issues may be caused by lewys body disorder,which Is a bit worrying as I am only 47

Hi Jo1975, I could have written your initial post word for word. I have all the same symptoms & had all of those blood tests too. I’m waiting for a DaTscan apparently that will confirm the diagnosis. Have you had a scan or are you getting one. I don’t have problems with dreams that some do but I find it difficult to sleep because of pain & tend to toss & turn all night. Some days I think he is wrong & it’s just essential tremor & on other days I’m genuinely scared that he is right. The not knowing is difficult isn’t it. At least if you know you can move forward & learn to live the best life you can. Take care x

Hi @Dildon , I have not been referred for any scans so far . I think we are in a watch and wait situation. The not knowing is definitely hard. Sometimes I feel as though I’m going mad . I hope you get your scan done soon , please keep me updated with the results .

Hi @Jo1975 my scan is on the 1st Feb so not long now. I know how you feel about going mad. I try to convince myself I’m walking perfectly normally & try to force my arm to move when I walk & take bigger steps but I end up just looking like I’ve come out of the ministry of silly walks & it’s painful. The tremor is the thing that is making me think he’s wrong as it’s not a resting tremor & that is what defines PD isn’t it ? Maybe I’m overthinking things & just need to wait & see. I hope you get answers quickly as it seems getting a diagnosis can be a drawn out affair. Take care of yourself & I will let you know if & when I get a diagnosis. :crossed_fingers::crossed_fingers:

Hello Jo
It took a DAT scan for me to get a formal diagnosis. This came soon after my first appointment with a movement specialist neurologist. (Seeing the consultant both on the NHS and privately). The DAT scan was done through the NHS as it is expensive.
I have been seen by a number of neurologists who have missed the diagnosis so worth asking about a DAT scan.
I felt exactly like you. That there was something wrong. The confirmation of PD is very unsettling but at least you then know.
I saw the latest consultant in May 2022 and got my diagnosis in July 2022 although I saw a number of neurologist over a period of 5 years. Keeping asking questions and read up on the condition. By the way my GP did not refer me and I had to self refer (privately). Be persistent and double check that they have the correct diagnosis.
Take care

Hi everyone, could you please tell me what a DAT scan is? My partner is recently diagnosed with tremulous Parkinson’s but as far as I know he has only had an MRI and blood tests, but neurologist diagnosed it within 30 minutes.
Feel we came out of appointment and atm have been left to it. Waiting for report and appointments with Parkinson’s nurse.
Ty jules

Hi @JulesAndSi A DaTscan is a kind of brain scan that measures the amount of dopamine in the brain. You have to take a pill, then have an injection & go back a few hours later for the scan. I’m lead to believe it’s a very expensive scan to do so they only tend to do it if the diagnosis is unsure. I haven’t had my scan yet but it’s booked for Feb. I’m sure there are other more experienced people on here who may be able to help more than me. Hope you get the help you need. Take care x

Hi @Dildon my tremor is more of an action tremor , only happens at rest occasionally. I also get a tremor in my chin and sometimes a type of internal tremor where I feel wobbly inside . I have read that some people have no tremor at all and some exhibit a tremor when performing tasks ie holding a cup etc . Wishing you all the best for your scan , please keep me updated, it’s good to talk to someone who can relate x

Dear @Dildon,
Thank you for your message. At the moment the consultant obviously doesn’t think Si needs it as he seemed convinced of the diagnosis. I think I’ll wait until we see the nurses and ask them, although no appointment yet.
I hope your scan in February gives you the answers you need, it does feel as though we are a little bit in limbo but others are having positive experience. I feel like we can only take one day at a time. Look after yourself and take care. Jules x