New here and after advice


#1

Hello everyone, I thought I would join here in the hope of some advice from people who know what its like to have parkinsons.
My name is scott and i’m 45 yrs old. My symptoms started around 8 months ago and have ranged from dizziness, nausea, fatigue, imsomnia, stiffness and aching joints and the dreaded tremors.
My doctor mentioned parkinsons and referred me to a neurologist. On my first consultation the neurologist didn’t really seem to take any notice of anything I said and the letter he sent to my doctor outlining the appointment was completely different to the appointment i had.
I then saw him again in january and he kept going on asking if I was stressed as he believed it was that. At this point my tremors were getting worse and he said he still didnt believe it could be parkinsons but he said he would request a DAT scan.
I received a letter from the neurologist on saturday saying the results from the scan had shown nothing conclusive and that it ruled out parkinsons.
I have visited many sites online and looked up DAT scans and the main thing I see is that they are not conclusive in diagnosing parkinsons and should be used alongside examinations and medication.
So far the examination my neurologist has performed is asking me to touch my nose and has dismissed all of my symptoms. I would love if my symptoms were something else but every doctor I have seen so far have said they feared it was but only a neurologist can confirm.
My next appointment isn’t till june and I fear that I am just going to be fobbed off again and was wondering if anyone here has had similar problems in their diagnosis.
Kind regards
scott


#2

Hi @scottpayne1974,

A warm welcome to the forum.

We have an active and supportive community so I’m sure you’ll receive some responses from our members shortly. Current evidence suggests that Parkinson’s tends to develop gradually and it affects everyone differently, therefore, the diagnosis can be quite complex. We have more information the diagnosis process on our website here - https://www.parkinsons.org.uk/information-and-support/how-parkinsons-diagnosed.

If you’d like to speak to someone about this, you can always speak to one of advisers via our helpline on 0808 800 0303 or email us at [email protected].

I hope you find this information useful.

Best wishes,
Reah


#3

My neurologist told me that the Datscan gives false negatives but never false positives so it can be helpful in confirming a diagnosis but not in ruling out PD


#4

Thank you


#5

Thank you


#6

Being fobbed off sounds familiar. I know exactly what you mean when you say the doctor’s letter was completely different to your appointment. I call it “neuroimagining”.

The UPDRS (link below) shows you which assessments for PD they could do and provides a description so they can be done in a standardized fashion.

While it is still fresh in your memory tick off the assessments performed in clinic and what you remember of your response. One would like to think that if a medical student failed to cover even the basic cardinal features that they would not pass the course…

DIY drug-history. Check with google if any drugs you have taken can cause parkinsonism. You know your history best. Do your own chronology of symptoms with a timeline of this drug that symptom etc. in my experience chronology is repeatedly mangled in reports in order NOT to indicate causality.

Google the criteria for PD and supporting symptoms and tick off yours.

“shown nothing conclusive and that it ruled out parkinsons.” Is that a contradiction? If the scan has ruled out parkinson’s doesn’t that mean it was normal (ie no evidence of degenerative disease). The conclusions are being made by the neurologist. What did he actually see? Watch out for slippery wording.

Keep copies of anything you give them in writing. You never know when you will get a phonecall from PALS telling you your file is lost.

MDS-UPDRS Part III: Motor Examination

The role of DAT-SPECT in movement disorders. Kägi G, Bhatia KP, Tolosa E. J Neurol Neurosurg Psychiatry. 2010 Jan;81(1):5-12.

Dopamine transporter (DAT) imaging is a sensitive method to detect presynaptic dopamine neuronal dysfunction, which is a hallmark of neurodegenerative parkinsonism. DAT imaging can therefore assist the differentiation between conditions with and without presynaptic dopaminergic deficit.

Furthermore, a normal DAT-SPECT is helpful in supporting a diagnosis of drug-induced-, psychogenic- and vascular parkinsonism by excluding underlying true nigrostriatal dysfunction.

D ifferentiating drug-induced parkinsonism from Parkinson’s disease: An update on non-motor symptoms and investigations F. Brigo, R.Erro, A.Marangi, K.Bhatia,M.Tinazzi Parkinsonism & Related Disorders Vol. 20, Issue 8, Aug. 2014, p. 808–814

Drug-induced parkinsonism (DIP) has been deemed the most prevalent form of secondary parkinsonism in the Western world and the second most common cause of parkinsonism after idiopathic Parkinson’s disease (PD).

DIP was initially described as a complication of antipsychotic agents, but later recognized as possible side effect of a number of other compounds including antiemetics, cholinomimetics, antidepressants, anti-vertigo medications, calcium channel antagonists, antiarrhythmics, and antiepileptic drugs .

DIP. … is presumed when a parkinsonian syndrome develops during treatment with a potential offending medication (usually a dopamine receptor blocking drug).

Symptoms should recover within 6 months of withdrawal of drug treatment, if applicable. However, the exposure to an offending drug can not be taken alone as the final proof to make a diagnosis of DIP, since symptoms, in a number of cases, do not improve or even worsen after that the “offending” drug has been withdrawn, raising the suspicion of the concomitant development of PD.

A body of evidence has been produced suggesting that the DaTScan can be a reliable technique to differentiate between PD and DIP patients with relatively good sensitivity and specificity values.

On the other hand, several studies have also shown that a number of DIP patients can show an abnormal DaT-Scan. Such subgroup has been deemed to reflect sub-clinical PD unmasked by the anti-dopaminergic drugs rather than true DIP and, in fact, in these patients motor symptoms do not recover after that the offending drug has been withdrawn.


#7

Thank you.


#8

Hello Scott, I have had a similar experience. GP referred me to gconsultant, I waited for 5 months for appointment with Neuroĺogist which lasted 8 minutes from walking in to leaving room. He didnt listen, or even look at me face to face. He refused to take the list of symptoms I had prepared. Again I had the touch my nose and little more. He said it was down to fibromyalgia, my pain meds and my imagination. I was telling him my family history as he was showing me out of the door!
The letter he sent to my GP was listing tests he had not done. Like yours it was if he described an appointment with someone else!
It took me several requests before one GP at my surgery believed me and referred me for a second opinion. The second Neurologist was completely different and arranged an MRI and blood tests. He confirmed certain symptoms he spotted during the appointment. I am waiting for my second appointment.
So I have got as far as you yet, but finalky I am being listened to.
Rose


#9

Thanks for the reply rose.
I saw a doctor the other day who has a lot of history in dealing with Parkinson’s. She was was outraged when I outlined what had happened so far and I now have an appointment with movement disorder clinic who speciwith Parkinson’s in 3 weeks time.
I live in Nottingham and have to travel to Sheffield for it but hopefully it will be worth it and I will finally get some answers.
Rose


#10

Hi Scott, that is great news. The second consultant I was referred to is part of the movement disorder section of the neurology hospital in Liverpool. Again out of my area but I am happy to travel to meet someone who specialises in the subject.
Rose