Dopamine Level's

About Parkinson's and health Newly diagnosed
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This may have been asked before, but I feel I need to get my heard around this one. Dopamine levels - Before any symptoms show themselves, about 40 - 60 percent of them have already gone. Also doing exercise does not create them, it just releases them and enables your brain to take advantage of them, it also enables your brain to become more productive with what you have left.

The reason for this is I have to have a DaTSCAN and I’m concerned that the exercise levels which I currently do may upset the scan if your body naturally produces it from exercise, which if my understanding is not correct, this is not the case! If that was the case, everyone who had PD would be exercising themselves to the limits of there own physical body.

So, another question is will exercise upset the readings of the DaTSCAN reading

Also a DaTSCAN is not to accurate with early diagnosis?

Snippit from Appraised by Kevin Galbraith, January 2016 " The single study evaluating DaTSCAN in early PD v normal yielded what was reported in the metaanalysis as a low Sn of 38%.(5) " and " which has itself been found to be incorrect in 6% to 25% of cases. " It’s also down to what the Doctor perceives too!

Is this correct, or does this mean something else?

I’m trying to get my head round some of the bits. Over a month ago, one doctor (I can see recommendation for him online and was recommended by another movement specialist) who said he was about 95% certain I had PD and to keep up the exercise as it was certainly helping (Which I know it to be as I was much worse beforehand) the second was not as convinced even though he said there are some tell tail signs, is questioning it.

Although I do not want to have Parkinson’s, I have been on a long journey with another Neurologist who was a complete waist of time and it now seems everyone who I speak with also says the same within the medical profession which I find quite scary. But ultimately, I do not want to be left high and dry either if the readings come back normal as the second Doctor has indicated.

I’m feeling extremely deflated at the moment since seeing the second doctor and since I have reduced my exercise levels because I do wish to upset the DaTSCAN results, I’m also experiencing a lot of my older symptoms which I found with exercise had massively reduced.

Any thoughts would be helpful

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Hi Shane,

Thanks for your post. We have a web page about how Parkinson’s is diagnosed here with some helpful information that may ease your mind. Our other members will be able to share their experiences too, or one of our Parkinson’s UK team will respond to your question.
You can also call our Helpline on 0808 800 0303 for advice. They are open from Monday-Friday: 9am-7pm and Saturday: 10am-2pm or email them at [email protected].

Best wishes,
Edwina
Moderation Team

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Dear Shane

I can understand your frustration. However, my understanding is that the Datscan is the most reliable indicator as to whether or not you have Parkinsons… I would certainly not discontinue your exercise programme as everyone says that it helps to delay things getting any worse, and I think it is unlikely to have any effect on the Datscan readings

Finding a consultant you trust is part of the answer - easier said than done, I know.

I was diagnosed in January this year after a Datscan and was started on medication which has controlled my symptoms completely every since ( a tremor in my left hand). I exercise as much as I can - at 83 and with chronic arthritis I am somewhat limited, but I do feel it helps.

Good luck - you are already doing what you can to help yourself - and that is to be commended.

Best wishes, and keep on exercising.

Knine

Audrey

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Thank’s both of you, I know since seeing the consultant (second Doctor) and reducing my exercise, I’ve been in a lot more pain, I’ve slowed down a little due to stiffness which has also decreased the swing of my left arm again (the same happened when I was unable to get to the gym when my kids were off school). I’ve also started walking a little more like a drunk person again which I felt with exercise I was keeping on top of (again I feel this is the slowness taking effect). I know my voice is effecting me to, as it’s been decreasing over the last few months and it’s just getting harder to talk and getting people to hear me (trivial things, but I guess these are little things that can sometimes hit harder than you realise)

So, I’m going to get back to the gym and outdoor running

As for the consultant (the second Doctor) I feel the decision was more to do with my age (hence the DaTSCAN), which is only 44 and a little bit of ignorance regarding the movement gained back from exercise. I was told these we’re the specialists for young people to only to be told that day that if it was PD, I would be one of only 4 other people similarly aged, thus his questioning it. I know the first Doctor who said he was 95% sure showed my wife the difference between my left and right wrist which she said afterwards that they felt different. The second doctors was just rough compared the first doctor and I feel I’m only in the early stages and being that rough would logically hide it anyway

I suppose I’m just cheesed off and having built myself up with exercise for such a long time to get to the place where I am today together with physical feeling the benefits to be doubted like that.

Like I said, I’m just a little deflated, I’m a strong character and will bounce back once I refocus again. After all, I have over last 18 months had to self help myself as the original neurologist didn’t do anything to help. I’d only seen one of his team twice during that period

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Hi Shane

Good to hear you are planning to bounce back - th sooner the better I think.
Good luck
Audrey

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I’m 70 and was diagnosed last October with PD after having a DATSCAN. It just shows the cells that are already dead, so exercise doesn’t affect the reading.

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Hi @Shane,

I hope all is well.

I’m glad that you’re determined to bounce back following on from your visit to your consultant. I passed your initial query onto our research team and although you’ve already had your DaT Scan, you may still find this information useful.

It is possible that exercise may have a minor effect on the results of a DaTscan, although there is not enough evidence to know the extent of this. A DaTscan is not a definitive diagnostic test for Parkinson’s, but can be used in combination with other measures to better understand what may be causing symptoms.

We know that a number of substances – including amphetamines, ritalin, modafinil, some antidepressants, some anticholinergics, some opioids, anaestheics, and smoking – have varying degrees of effect on DaTscan results. Also the radiopharmaceutical that is used in the procedure was originally derived from cocaine, as such this drug would also alter results.

If you are concerned about the effects of exercise on your DaTscan, please speak to your Parkinson’s nurse who should be able to advise.

I hope this helps.

Best wishes,
Reah

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Thank you all for coming back to me, that’s very interesting about a slight effect with the DaTSCAN and exercise.

I’ve already started doing my gym exercise again, although I’m going keep it to twice a week, I’ve found that some of my older symptoms have come back which I was happy to have found a way to get on top of

As all the other things mentioned that could effect the DaTSCAN, I’ve never taken anything in my life, I’ve never smoked either. The only thing I have done is have a few drinks and even then, that’s only occasionally. Sound really boring now don’t I, Hahaha…

So I shall have to see what the outcome is for the DaTSCAN when I have it at the end of the month.

I’ve received a letter from the second specialist who although was very nice has worded his letter in a way to say that it maybe Parkinson’s and then again it may not be. So not very clear. He also seems distracted by my right hand side which was effected by stroke like symptoms back in 2016 which has been another fight altogether (although I have never had a diagnosis as to what that was) and he seems put off by my age even though there is some history of it in the family.

My voice has fallen off a cliff too recently and only yesterday, whilst in work, one of my Rep’s asked if I had Parkinson’s as they had seen it in there friend. So that’s now the second person to openly ask me from there own observations.

As I feel it’s the left hand side with the Parkinson’s, I’m still a little be deflated due to him being distracted.

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Hi @Shane,

Thanks for your response. I’m really sorry to hear that you’re feeling deflated, but I can appreciate that not having a definitive diagnosis can evoke this feeling.

The letter you received wasn’t very clear either which I’m sure is only adding to your confusion, however, you still might find it useful to check out the ‘newly diagnosed with Parkinson’s’ section on our website here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons. There’s a lot of useful information here including tips on what to ask your doctor. Again, our helpline is here for you too so do feel free to give them a call.

I hope you feel in better spirits soon!

Best wishes,
Reah

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I’ve had my DaTSCAN, so I can now get back to some proper exercise again. I’ve really noticed my cognitive thought processing has slowed (multi tasking, conversation ect…) together with my spatial awareness becoming a little more difficult to judge plus pain in my body has increased (pluse the other stuff mentioned above) since I reduced my exercise waiting on the DaTSCAN, so for me exercise looks like it’s a must

Interestingly whilst getting onto the machine, I found I couldn’t lift my left leg as much whilst on the machine when they added the leg support (didn’t know that I’d lost a little movement there - also had to get onto the machine on the right hand side as I just couldn’t figure how to get on it from the left. Strange feeling). I also felt very odd afterwards and was quite disoriented for about 10 mins afterwards. I struggled getting off the machine with sitting up too (usually use my bed post to get out of my own bed) which some much needed help was offered which I was grateful of, I must have looked rough, :smile:

Also had the speech therapist visit today, so it’s been a very busy week. The lady was really nice, she’s suggested I go and have a camera check my voice box just to be on the safe side and none of the specialist or my JP have suggested it (they’ve all said it’s most likely the Parkinson’s including the specials).

So now it’s just a waiting game game :slight_smile:

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Hi @Shane,

I’m glad you were able to get your DaTSCAN and all went well with your speech therapist.

P.s. I’m sure you didn’t look half as rough as you thought you did. :wink:

Best wishes,
Reah

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Hi @Reah

The speech therapist told me to breathe in the steam from boiling water which has calmed my hoarseness a little with my kids and wife noticing it instantly. I’ve still no range though and still sound quite and have to breath my words out, but I feel better that they can hear me more clearly :smile: so to me, it’s an absolute result and I’m so grateful

Cheers, Shane

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Well, my DaTSCAN came back normal and another appointment has been made to see me in 8 months. Not sure what to think or do (Wife is going mad - she just knew it would come back normal). Should I go back to the paid neurologist who was 95% sure I had Parkinson’s and pay again so I can be referred to his team or wait until my symptoms become easier to see with who I’m with now?

My wife has seen my face, which she says is expressionless and emotionless at times even when she’s talking to me, I’m finding it increasing difficult to make facial expressions too with a huge degree of concentration just to find what parts I’m trying to move.

My sense of smell is reduced, my arm swing is reduced (left), I keep catching my feet on the floor when walking together with a slowness of pace, a small change in elevation also creates some unusual feelings inside too which I’m unable to describe. I’m unbalanced (some say I look like I’m drunk when walking) as well as slurring my speech at times. I’m finding my spatial awareness is diminished too bumping into people or things more recently. My memory, word recall, and cognitive/concentration side are diminished too especially when things are moving more quickly or I have to perform a task.

I’m also have more difficulty reading out aloud, the difficulty is processing what I’m reading and trying to convey that into spoken words which really shows my slurred speech. The range in my voice is becoming quite monotone and quiet, I find when out walking I drool a small amount too, I’ve also had a few instances where I been chocking on my own saliva for no reason. My voice also have a hoarseness too as mentioned above. Even though I never remember my dreams, the only ones I’ve remembered over the last six months of late have either been bad or not that haven’t been so good

The tests with my hands have shown that something is certainly going on with my left hand side, even though I’m right handed, my handwriting is now small and cramped. When counting backwards showed some tremors (but through both of my hands which I’m guessing is not normal for Parkinson’s although I feel my right hand side has something more to do with what happened to me almost two years ago)

I also suffer with a lot of lower back pain. My shoulder pain used to be when I was out walking for a while, but now its more common whilst without walking I also have neck pain too when looking behind me. I have what I can only describe as cramp in my calves when waking up in the morning (it’s usually a toss up as to whether its the back pain or the cramp that gets me out of bed), this morning is the first time didn’t have cramp, alas back pain it was to get me out of bed. I have some very strange feeling from the inner and ball of my feet too which feels like a very mild cramp, but the intensity seems to be gradually increasing.

I think this is the most comprehensive description I’ve ever expressed of what is wrong with me, so sorry for the length. Maybe I need to show this to the doctor too as I’m rubbish at explaining what’s wrong with me too, I’m a typical bloke Hahaha.

I will add, it’s certainly a very strange feeling when find out you cannot control parts of your body with some of tests they ask you to perform and don’t get me wrong, I don’t want to have Parkinson’s, but if it’s not this, what is it

I guess, because of my age and the fact that I have no visible tremors (I do have internal tremors) together with the fact that the DaTSCAN has come back normal make things more difficult for a diagnosis Parkinson’s

Oh well, at least I’m back at the gym and starting to refocus on that area. Down yesterday for a 5K slow run before I get back into the swing and some weights.

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Hi Shane

Just a few thoughts. The idea that only much older people develop PD is utter rubbish and I would seriously question the competence of any medical professional who said someone in their 40’s was unlikely to have PD due to their age. Looking back I started to have symptoms, movement issues and fatigue mainly, aged 47, although I was not actually diagnosed for another five years.

I don’t know anything about DaTSCANs, never been asked to have one. I was referred by my GP to the regional neurology centre here in Liverpool, saw a consultant who manipulated my hands and arms and watched me walk up and down the room. He had no hesitation in diagnosing PD. You should probably show your doctor the list of symptoms you wrote out above and ask “if it isn’t Parkinson’s, then what is it?”. I actually experience many of the symptoms you describe. That does not mean you have PD but there is something there and they should be coming up with some answers for you.

Reading accounts by people who struggle to get a diagnosis leaves me feeling fortunate I was referred to a consultant neurologist who acted decisively. Hang in there.

John

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@JJ27

Cheers for the words, I think I’m going to ask the first neurologist to take a look at my DaTSCAN as I’ve read that the main error with a scan seems to be human interpretation

What is interesting, last night I had my first dream where I was acting it out. Wife woke me up whilst I was in some kind of fight with a group of people attacking me. My other half woke me up as I was throwing a punch :open_mouth: I cannot remember any more though as my dream recall is so naff

I never remember dreams unless I’m suddenly awoken like last night, that’s now the fifth bad dream I can remember, the first three were really bad compared the the last two, one was a butcher who came after my family and I really don’t need to tell you how that one ended, another was of me drowning in a tube of water whilst on holiday with the family watching and the worst one was Nuclear war where I could see my young son was the only one who survived the white out even and I was able to watch him suffer to his inevitable ending which is the worst thing I’ve ever dreamt. These have all happened over the last six months

Damn dreams, glad I don’t remember them to much if they can be so vivid :sweat_smile:

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Hi Shane,

Confirming someone has Parkinson’s can take some time as there are other conditions with similar symptoms. A normal DaTSCAN can be helpful in showing that a person’s symptoms are not caused by Parkinson’s, but may be due to another condition. For example a tremor may be caused by essential tremor, not Parkinson’s. However there is also currently no definitive test for diagnosing Parkinson’s.
Our information sheet has more information on the process of diagnosis

If you feel that the consultant may not have given you a correct diagnosis you could request your GP to refer you to a different Consultant under the NHS for a second opinion or choose to see a consultant privately

I hope this helps.

Best wishes,
Reah

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Hi @Reah

Thanks for the kind words and I know it’s probably one of the hardest illness to diagnosed along with other similar illness. It will be a god sent to me if it’s not as I don’t want it although I do need to know what is going on

I actually though I might have had essentials tremors in my right hand due to what ever issues I previously hand down my right hand side, but as they were none distractible, I’m guessing not from the Parkinson’s Doctor

The Doctor has said there is something wrong, he just doesn’t know what it is. I also think that the very first neurologist whom it seems is not highly regarded within the profession (which I was unaware of until recently) hasn’t done me any favours with my notes as he was unable to diagnose me with anything for almost two years even though I have all the symptoms of having a stroke including a slight droop on my face which the latest Doctor picked up on. Because of this I’m not a standard case and I know this, but I do feel like I’ve just been dismissed.

I know the latest Parkinson’s Doctor spent more time checking my right hand side even though all his comments about my left hand side were suggestive of Parkinson’s hence the DaTSCAN. Even the last letter doesn’t say that it’s definitely is or isn’t it when you read it properly, it just says it reassuring

I suspose the big thing is the inconsistency, the second neurologist (a Parkinson’s Specialist who was recommended by another movement specialist). He was 95% sure and said he could be wrong as it’s a hard illness to diagnose although he was quite sure. He was very thorough in his examination of me and said I had all the tell tail signs with him even showing my wife that my left hand had a cog wheel effect when he distracted me, which she said she could feel it. Myself I didn’t realise he was distracting me until after until seeing the Parkinson’s Doctors notes.

On the other foot the specialist Parkinson Doctor seemed to completely disagree with him and that’s such an inconsistency that it almost beggars belief that a Specialist neurologist for Parkinson’s can have one thought and a specialist Parkinson Doctor can have such conflicting thoughts

I am grateful of the Parkinson’s Doctor, but I do feel I’m going to have to pay again with the Parkinson’s Neurologist just to make sure. It feels horrible to feel that kind of in the doubt the Parkinson’s Doctor, but the Parkinson’s Neurologist just seemed to be far more thorough and since I’ve had horrendous experience back in 2016, I just feel it will be safer to get a second opinion again :slight_smile:

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Hi @Shane,

It’s awful that you’ve had such a terrible experience with your Doctor, but if you feel like you need a second opinion then please follow your intuition.

Let me know if you need anymore help from me.

Take care,
Reah

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Been to see the neurologist and he still thinks I’ve got Parkinson’s, because of this he is sending me to one of the main specialist in the area to get the confirmation he feels I need to move forward

So, although my diagnosis is still a little in the air, things are moving forward again. Was glad to hear that having a normal DATScan is not enough grounds to dismiss a Parkinson’s diagnosis, it just means that it’s pointing towards a particular type of Parkinson’s

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Hi Shane, My husband Jim and I are in the USA and I have been searching for any info I can get because he too had a Normal Datscan last week. His symptoms are very much like yours. Our neurologist after 5 years is now saying it might be stroke related, but he has argued with me saying there wasn’t enough brain damage to show that in the passed. Now since he is claiming it isn’t parkinsons his ans was it is stroke related and to quit the Levadopa and exercise more. Call him back if symptoms get worse. What I say, it is like he is just dismissing us. You mentioned that it might be pointing to a particular type of parkinsons. Have you been able to figure anything out yet. I want to mention the carblevo has never seemed to do anything in 5 years that is why I have always had doubts of parkinson’s but I am still searching for some kind of relief for him.