Dopamine Level's


#1

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


#2

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 hello@parkinsons.org.uk.

Best wishes,
Edwina
Moderation Team


#3

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


#4

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


#5

Hi Shane

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


#6

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.


#7

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


#8

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.


#9

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