Clinical picture is in keeping of Parkinsonism

[Gm]

Hi my names Gary I am 37. I was told recently “ you have Parkinson’s” letter seems to suggest that/back that up but been told I need a couple things to confirm going to assume because of age?.

I did post a while back since deleted as was hundreds of symptoms/questions and going to re do now but more up to date/relevant

So had a couple years of crazy amount of tests done examples but not all being - numerous MRIs, X-rays, blood tests even been to neuro physio who may I add has been excellent. Had suspected MS followed by b12 injections and some other stuff all cleared or normal ect.

Recently I seen a private neurologist who I am being referred back to on NHS has wrote this in his letter to gp.

Garys neurological examination showed resting tremor on the left side, reduced arm swing,
and significant cog-wheeling and bradykinesia on the left side.

Overall, the clinical picture is in keeping with Parkinsonism.
To take things further forward, I recommend a DAT scan for confirmation of Parkinson’s
disease. I have explained this to Gary and his partner.

I understand that his examination/clinical diagnosis could be wrong but extremely unlikely as he is highly skilled neurologist and very nice for what it worth lol

anyway I am just wondering how long a dat scan takes ie waiting times? As he on holiday for two weeks and gp is phoning me on Tuesday going to assume to talk about letter ect and 1 last thing has anyone had similar pre diagnosis wording in a letter or whatever?

[jason.mod]

Hello Gary,

Welcome to our community forum. Waiting times are extremely difficult to forecast as every person’s needs are different, and where you are in the UK is a major factor. You should be hearing from our members with regard to their experiences, but the best course of action is to communicate clearly and exhaustively to your medical team. Do not leave any question unasked. You are welcome to call our helpline on 0808 800 0303 and an advisor can speak with you about finding additional care if you need it. And of course our website, Parkinsons.org.uk, has an easy-to-use search function that may provide some of the information you’re seeking.

We hope this helps, and please accept our warmest welcome,

Jason
Forum Moderator

[Steve2]

Good morning Gary … I had a similar letter to you & had a
positive datscan in June 2023. The letter & follow up appointment took a matter of weeks.

Any questions please ask.
Best wishes
Steve2

What is a DaTSCAN?

DaTSCAN is a brain scan to diagnose Parkinson’s disease. It involves an injection into your arm of a radioactive substance called DaTSCAN, which is taken up into various parts of the brain. It emits gamma rays which will be detected by a piece of equipment called a gamma camera. Depending on how it is distributed, we can differentiate Parkinsons syndromes with Essential tremor or Lewy body dementia with Alzheimer’s disease.

If you have an iodine allergy please inform the department. Please bring your medications list.

Can I have a DaTSCAN if I am pregnant or breastfeeding?

If there is a possibility that you are pregnant, or if you are currently breastfeeding, please inform the department before your appointment as we will likely have to re-schedule.

Can I bring someone with me?

Whenever possible, you should attend your appointment alone, unless you need a carer to support any additional needs.

What will happen at my appointment?

Firstly, we will give you two tablets to swallow called Potassium Iodide. These tablets will stop the DaTSCAN entering the thyroid.

One hour after you take these tablets, the radioactive DaTSCAN is injected into a suitable vein, usually into your arm or the back of your hand.

We have to allow a minimum of three hours delay for this injection to work. You may leave the department during this time and can eat and drink normally.

DaTSCAN

The scan will take 45 minutes. You will be required to lie still on an imaging bed with your head supported in a special head rest. We may use straps to keep your head still. We will then take a series of images around your head.

What happens after my appointment?

After the appointment you can resume all usual activities. Eat as normal and keep well hydrated.

If you have young children or pregnant friends/family please limit close contact with them for the rest of the day. You can be in the same room but avoid sitting close to each other for long periods. This is to avoid them receiving any unnecessary radiation exposure.

When will I get my results?

The report will be sent to your referring doctor. They will contact you to discuss the results. If you have any enquiries regarding your results please contact the department where the referral was originally made.

Are there any risks with this procedure?

The radioactive tracer administered will expose you to a small amount of ionising radiation, consistent with the desired diagnostic outcome. The risks are very low and the benefits of having the results from the DaTSCAN greatly outweigh the risk.

[Gm]

Thank you for reply’s it’s much appreciated I am sitting currently reading so much stuff in prep for yes it’s 100% confirmed or not through datscan.

I don’t want to be unprepared to ask questions maybe a thing to ask yourself Steve is there anything I should be asking if not covered. Obviously if I am told it’s 100% positive for Parkinson’s again I think it only a matter of time due to the significant cog wheeling and bradykinesia on left side regardless of other symptoms.

[Steve2]

Hello GM … No !!! a positive datscan does not 100% mean that you have Parkinson’s. Equally a negative datscan does not mean 100% that you don’t have Parkinson’s. But a datscan is the best test there is for Parkinson’s. Add it to the neurologist’s examination he can say that it is probable.

Actually a datscan isn’t that important as you will probably be treated with Parkinson’s medication either way.

I did ask my neurologist if there was a reliable test for Parkinson’s he said there was, it’s called a autopsy.

If you have a positive datscan …

Questions … Which form of Parkinson’s does he think you have?
Questions … What medication will you be on ?
Questions … Should I make any changes to my lifestyle ?
Questions … Can I be referred to a neurological physiotherapist ?

Most important is that you don’t over worry yourself. Yes being told you have Parkinson’s is a real shock at first, but you get used to it & it won’t kill you.

Any more questions do ask.

Do let us know your datscan results.

Best wishes
Steve2

[Gm]

Thank you again I did wonder this tbf re datscan

Also similar with meds if I’ll be given them prior to scan or after regardless of scan results

And thank you for advice on possible questions funnily enough as they suspected ms initially I was referred to a neuro physio which I am currently seeing next appointment soon so should be interesting that’s for sure.

I will let u know results of scan and what is following next

[Steve2]

A question for you … Do your current symptoms worry you? Of course it is worrying to not know what they are. Are you keen to take medication that will help your symptoms?

My symptoms initially were fairly mild.

Steve2

[Steve2]

If you have Parkinson’s & do get put on medication it is important to start on a low dose & work up to the ideal dose. To higher dose that you are not used to can make you ill.

Steve2

[Gm]

Obviously if medication makes symptoms better then I am all for them even if it not fully better type thing.

I would not say they worry me but again some worse than others the slowness when walking and tremor when arm goes twds stomach can be frustrating but not awful.
I am quite lucky in way that my left side worse but I am right handed / stronger on right

I was at a party recently and did get upset that I could not clap to a song properly and when my wife took my arms/hands to help me kind of relax which I did want I got even more upset as I went from my speed to her speed and her speed clearly to fast for me ie walking and moving arms and when she obv moving hands to like help me move mine when dancing it’s rigid but these things I am hoping meds should help ease.

I would like to apologise for the grammar ect I do have dyslexia which annoying in its self.

[Steve2]

Another thing you should ask is do you have “neuropathy” ? 55% of Parkinson’s sufferers have this as I do. It can also be treated.

I am on co-careldopa [aka Sinemet] for my Parkinson’s & Amitriptyline for neuropathy. Parkinson’s medication does have very probable side effects. Insomnia, nightmares, constipation & fatigue in my case.

Steve2

[Gm]

Yea I’ll defo ask regarding neuropathy and medication side effects wise only one would worry me and it’s fatigue I all ready suffer from that currently but that could reduce if things get better with meds well that’s the hope.

[Steve2]

It is also important to exercise & eat healthily.
Maybe keep a “health diary” … exercises done, pills taken, symptoms experienced. Good day, bad day etc.

Also limit your alcohol intake.

Steve

[Gm]

Yea been doing that a lot recently thankfully don’t drink alcohol

[Steve2]

Also you will need to tell the DVLA.

Steve2

[Plus1]

Hello GM
Sounds like you are attempting to tackle this life hurdle positively and as well equipped as possible - Bravo. Let me say incase you think otherwise Parkinson’s does not kill you. I suspect you are already well aware of that.
I’d suggest supporting Parkinson’s UK and subscribing to them to receive their magazine always full of interesting info. The is a Young Onset Parkinsons Group who you may want to consider being part of. Parkinsons UK Helpline is a wonderful service full of help, advice snd support, highly recommend them. The Helpline was absolutely great for us when my husband was diagnosed 12 years ago was the only place we felt understood and were able to tell us what next, suggest what we did.
Yes my husband received a similar letter to you and his following DAT scan took approx another month but the results from it were with us within a week.
Maybe the best piece of advice we were given is ‘you have a choice where you receive treatment from under the nhs’. As such we researched hospitals which hold the accreditation of hospital of excellence for the treatment of Parkinsons. Then went to our GP and requested a referral to one, in our case Kings College Hospital London. We have sought to be actively involved in any research programme we can either via Kings College or Parkinsons UK.
My husband also found great benefits to exercise undertaking various types, cycling and the gym at every opportunity. We have taken part in the ballet research project run in conjunction with The English National Ballet Company which is proving to make a huge difference.
Explore as many avenues as you can, you happen to have Parkinsons, as they say Parkinsons doesn’t have you.
All the very Best Jane