Normal datscan, what happens next?


#1
Hello, I'm new to the forum and as yet undiagnosed. I saw a neuro in January because my gp suspected I could have MS. The neuro thought parkinsons more likely so sent me for a datscan. My gp has told me the results are normal so now I'm waiting to see the neuro again. He seemed pretty sure it is parkinsons so I'm just wondering if anyone knows what happens next? Many thanks. Andy.

#2

Hi Aw1,

From my experience your neurologist will study the scan and go through the symptoms with you plus carry out a few simple tests to ensure he/she can rule out other causes or neurological diseases. If PD is suspected, He/she will then recommend a drug regime to suit what level he/she thinks you are at. Parkinson's is different for each individual and getting the drug regime right can be difficult. 

Good luck,

Jules77


#3
Hi Jules, Thanks for the reply. When I saw the neuro he got me to do a few things like walking down a corridor, write a few paragraphs on some paper and checked how my limbs moved. He also asked about the symptoms and medical history. He then arranged for an MRI, a datscan and more blood tests and said I would see him again in 3 months. The 3 months are up next week and I haven't recieved an appointment yet. I've read a few things about people having normal datscan results yet still being diagnosed with pd.I'm just hoping it's a case of no news is good news! Regards Andy

#4

Hi Andy,

From my limited knowledge an MRI scan doesn't give a definitive diagnosis of PD but can rule out other neurological diseases.

A DaTscan is also an imaging technology that uses small amounts of a radioactive drug to help determine how much dopamine is available in a person's brain.  It's a machine similar to but smaller than an MRI machine. It measures the amount and location of the drug in the brain. I don't think DaTscans can definitely diagnose Parkinson's disease but are used to help a doctor confirm a diagnosis. The results of a DaTscan can be used to help rule out other diseases that may cause loss of dopamine in the brain.  As  far as I'm aware a DaTscan cannot differentiate between those diseases and Parkinson's but can give a very good indication.

Push to see your Neurollogist ASAP.

As you say, let's hope no news is good news!

Jules77

 

 

 


#5

Hi all, I'm waiting for a follow up appointment with a neurologist after having a datscan and MRI. He said he would see me in 3 months by which time he would have the results but that should have been over 2  months ago and I don't have an appointment yet. My GP has said the results came back normal so I'm just wondering if that's that's the reason for the delay? Meanwhile the symptoms are getting gradually worse. Has anyone else had a similar experience while trying to get a diagnosis?

Thanks

. Andy


#6

Hi Andy,

Apologies if you've heard any of this before. My diagnostic route began September 2008 at my GP's. He got me to do a few very basic tests and listened to my description of the symptoms. He arranged an appointment to see the Neurologist. 

Saw Neuro November 2008. He put me through various physical tests etc. He explained that there was no single test for PD, it, in most cases, means ruling out other possibilities and basically seeing what's left. He reckoned it was PD from the start, but to be certain I had blood tests for all sorts of things, an MRI scan and a deep look into my by the eye consultant looking for any signs of Wilson's disease. I also started on Sinemet+ 125mg, 3 per day.

The Sinemet+ did make a clear improvement in controlling the symptoms, that combined with all of test results left us firmly with diagnosis of PD in June 2008.

In terms of the delays you're experiencing, if you know which hospital the GP is referring you to you've nothing to lose by contacting their Neurology dept/outpatients dept direct and asking a few questions.

The results from any test should not reduce the rate of progress towards a diagnosis.

Hope this helps, if not feel free to come back for more.

Regards, TRACTORMAN. 

 


#7

Hi tractorman

Thanks for the reply, I've already spoken to the secretary who just said that the neurology department are way behind with appointments. I've read a few comments about the datscan and its accuracy and I don't see how I could be diagnosed with a negative result. I have several symptoms which indicate Parkinson's-loss of sense of smell, pain,fatigue, arm swing,masked face so I'm confused as to what else it could be. I'll keep pestering them for the appointment.

Thanks. Andy

 


#8

Hi Aw1

I am currently in exactly the same situation as you apart from my datscan has come back with an abnormal result, lack of dopermine on left side hence right side stiffness pain etc.ive been waiting for a follow up app with neuro for 2 months now, rang hospital to be told hes way behind with appointments so looking at another 3 months wait at least. Ive finally decided to get the follow up done privately, seeing the same guy but quicker and have to pay! Seeing him on 27th of june so i hope i get a definitive diagnosis then. Good luck with you appointment ill post again when ive seen neuro

Michelle


#9

Hi Michelle, sorry to hear that you're having to pay for your appointment but I hope you get a diagnosis and treatment quickly. Why do they say we'll see you in 3 months when they must know its going to be much longer!                       Best wishes

Andy

 


#10

Hi Andy

Well as promised just had my appointment with neuro. Parkinsons has been confirmed, although i kind of guessed i feel shell shocked to actually hear the words! He wants to start me on levadopa asap às he says he thinks its the best way to go.

Hope you are getting on ok

Michelle


#11

Hi Michelle, I'm sorry to hear about your diagnosis. Even though you expect it, it still must be a shock. Hopefully you're medication will kick in quickly and you'll start to feel better soon. I'm still waiting for an appointment- 10 weeks overdue now and  haven't heard a thing! I don't know what to  expect when I eventually go because of the negative datscan result. Meanwhile the symptoms continue and work is becoming more difficult. No support from employer as I'm self employed. I'll let you know if and when I hear anything. 

All the best Michelle

Andy

 


#12

Hi andy, 

I think given the circumstances maybe call the neuros secretary and ask whats going on? I think the possibility of Parkinsons is hard enough without all the stress of waiting for appointments. Its taken almost 2  years to get my diagnosis which is long enough but some people wait much longer. My neuro apologised profusely yesterday and has promised me a hospital appointment next time but i wont hold my breath!

Good luck

Michelle


#13

Hi Michelle, I've spoken to the secretary twice and my gp has written to them but I still didn't hear anything. All the secretary said was that they're behind with appointments. It seems that there aren't enough neuros to go round on the nhs! Hopefully now you're on treatment you won't have to wait so long for your next appointment. Fingers crossed!

Andy


#14

Hi andy

Yeah thats what i was told when i rang even though my dat scan was positive. He has promised me now that ill be seen quicker at the hospital but there does seem to be a huge lack of neuros on nhs. I start my treatment tomorrow so hopefully ill start feeling better soon. I hope you get some good news soon, this living in limbo is no fun and not good for already high stress levels

Michelle


#15

Hello again, I'm just hoping for some advice please. I'm still waiting for my follow up appointment after my scan results which my GP has said look normal. As I'm  3 months late for this appointment I rang the hospital and spent over an hour getting absolutely nowhere. When i did finally manage to speak to somebody I was told again that the neurology appointments are running way behind. I asked to  be contacted should they have a cancelation but I'm not too hopeful that will happen! 

I explained that my result's came back normal and was told  that's good, which it would be we're I not still having all the symptoms! 

My dilemma now is whether I should pay to see the same neuro considering the datscan results. Any advice would be greatfully received. Thanks .Andy


#16

Hello again, hope everyone is doing OK. I finally saw the neuro on weds and got the answer to the question what happens next? He told me the scans were normal and asked me how I was. I mentioned the fatigue and he said everyone gets tired sometimes. I mentioned the leg pains keeping me awake at night and the weakness and walking difficulties, he said anyone can get the leg burning pains. My wife mentioned the mood swings and blank face, he said everyone has mood swings.
I had a list of other symptoms but didn’t see the point of mentioning them after that. Ended up having more blood taken, an ECG and have to have a chest and abdominal ct scan.
I was hoping to be put on some medication for the symptoms but came away with nothing. All in all, no diagnosis, no pain relief or help with fatigue so now feel even more confused and frustrated.
Sorry for moaning!
Andy


#17

Hi AW1

I’m not surprised you’re frustrated and fed up, to be fobbed off for that length of time and then dismissed as if there’s nothing wrong with you is very poor.

I would be looking for a 2nd opinion or trying the private route with a different consultant.

What area do you live in? I work for NHS England so I can try and find out what your options are and who you need to contact.

I’ve only been on this site a few weeks and I can’t believe the difference in services and patient care across the country. I feel very fortunate that living in Leeds I was seen, scanned etc and diagnosed within about 4 months and we have access to 4 PD nurses. We should all have similar services.

You’re entitled to moan…

Jayne 849


#18

Hi Jayne, thanks for the reply. I live near Hull in East Yorkshire. I must admit, I was pretty sure that I had Pd due to the symptoms but the datscan says otherwise. I don’t really want to pay private just to be told the same thing by somebody else.
Andy


#19

Hi Andy

I wouldn’t want to pay to go privately either, was just thinking of options.

If you still have the symptoms can you go back to your doctor? They need to get to the bottom of it. If it’s not MS and it’s not Parkinson’s the symptoms must be caused by something otherwise the GP wouldn’t have referred you in the first place and even the Neuro suspected something before the negative datscan.

Jayne


#20

My gp referred me to the neurologist because he suspected ms initially. I went to the appointment stressing about Ms and left stressing about Pd. I thought the neuro was very good at first, he asked me about the symptoms and assessed me physically. He said straight away he thought it was Pd but wanted the scans to confirm. I’ve read that the clinical assessment from the neurologist is the most important part of the diagnosis so was surprised when he said that my problems are not neurological. I was also surprised that he didn’t examine me again.
I’ll visit my gp again and discuss it all with him.
Andy