Hi, I have been told by my Neurologist that I may have first stage Parkinsons and that I should a DaTscan but I can't find a hospital in my area that does them, I have looked online but to no avail, he did recommend one but they have stopped doing it. Can anyone help please, I live in Essex and am willing to travel as this is driving me nuts. Just to point out I have gone privately through my medical insurance and am not sure they will pay for this.
Surely it's his job to find one and refer you?
And a good neurologist should be able to diagnose likelyParkinsons without a Dat scan.
Usually, if the diagnosis is likely, one is prescribed Parkinsons meds and if the symptoms improve, it's Parkinsons.
Also you need to check if the scan is covered under your insurance as I assume it is an expensive procedure.
My first reaction, not knowing any of the people involved, would be to find a new neurologist!
Good luck!
GG
That seem's funny if he's suggesting you should have a dat scan nhs or privately then surely it's up too him too source and supply one. i had mine at addenbrookes cambs nhs.
Hi old dog . I agree with GG and sea angler that the neurologist himself should be referring you to the nearest one . I would've thought he would know where that was . What about one of the London hospitals ? Darenth valley hospital dartford do the scan . Not far from you ? The scan has only been available in the uk for about eleven years I'm told and requires someone to read it that has read many and has a lot of experience . For many years a good neurologist has been diagnosing pd by a persons symptoms , several tests in the clinic environment eg watching you walk , lack of arm swing , poor handwriting etc and as GG says response to parkinsons medication . Even with the availability of this scan I gather from what I've read that this is still ultimately the case and the dat scan should be to support opinion and can show dopamine loss . Many people have not had the scan but diagnosis confirmed by response to meds . Best wishes M
Everything said by gg is correct go back and ask to be referred bbx
Hi Old Dog
i was diagnosed September last year.
i also went private after having 3 NHS Appts cancelled!! Also live in Essex but had to go for dat scan in harley street. It was completely covered by Bupa. Took all day though. Queens in Romford do them but your consultant has to be registered with them. It's called Harley St at Queens. Complicated.
My consultants secretary found the Harley Street clinic and booked everything in really don't think this is something you should be expected to do yourself. You must need a consultants referral for it.
hope this helps
Hi this is my first post, I was given a pd diagnosis in Dec 213 by neuro Dr and have been taking a slow releasing pramipexole tablet since then and felt so much better , my symptoms are tremors more on my right hand then left ,slowness in walking,sleep problems,short term memory loss, fatigue,restless legs
I had a dat scan last summer which has come back negative, just had my first appointment in 13 months with the neuro Dr and she now says that it can't be pd because the scan is definitive but she is not going to take me of the tablets because I feel so much better , I don't know what to think now surely the symptoms speak for themselves can any one out there advise I feel so low now not knowing what's wrong with me
Hi Libby Jane, I don't think datscans always give a correct diagnosis. Mine came back negative from the person who did the scan but my neuro dr had a look at it himself and saw slight evidence of PD. My diagnosis was based mainly on my symptoms and the positive results I had from the parkinson's medication. Your symptoms are similar to mine but I have the tremor on the left side. I also suffer muscle and joint pain and stiffness and I have no swing in my left arm. However, the medication helps greatly. I am now on a slow release pramipexole along with sinemet. I know it is awful not knowing but it is great that you feel so much better on the pramipexole. I can't say if you have PD or not but I would just say to go back to the doctor if your symptoms come back or become more troublesome. I hope you will be fine. Lexi
Thank you Lexi for your response it's good to know others have had similar problems , my neuro Dr really made me feel like I was making it all up, she has not even seen the scan because she has been of sick herself for months , & another colleague of hers had said its negative ,she made a big point of saying the test is devinitive , going to see my own gp next week hoping she might be a bit more supportive
Hi Libby . I found this interesting article that may be of help . I think your neurologist should have looked at the scan unless she feels she is not experienced enough to read it accurately . As the article says that has been a problem as they rely on the naked eye and need to be read by someone with a lot of experience in reading them . They have been misread . Although FDA approved I think it's important to note they are not FDA approved for the diagnosis of pd . Therefore not definitive . The general consensus seems to be diagnosis based on symptoms and response to medication and you are responding well . Maybe get a second opinion ? Best wishes M
Hi Maddison yes i ami going to see my GP next wk and will ask her what she thinks about a 2nd opinion although I am worried once your labeled ( it might all be in your head ) that they stick together, I have taken my meds at 7 this morning and just had to climb up the stairs & my legs are so stiff & painful just wish they could feel it , will be ok in an other hour or so when meds kick in fully , sorry for all the moaning I sm usually quite an optimistic person . But thanks for replying Liz
Did you click on the link I posted ? Have a read. Hope you feel better soon . Don't worry about having a moan you are allowed . I felt like that yesterday . Struggling to do my food shop and then couldn't get pound out of trolley . Was gonna leave it and then someone helped me . Take care .Have you a pd nurse to talk to ?
Libby Jane,
Hello You can talk this through with the PD specialist nurses on this Website just because your neuro is a Dr doesn't mean she can't be wrong. Your symptoms in your leg's sound some much like mine it's shouting out PD. Getting a walking stick will help I use one to help with my balance and I'm only 49.
I wish you well.
BB x
Thank you BB the neuro Dr won't refer me to the PD nurse now , and my GP has tried but was told there is a long waiting list but they have but my name on it , it's so difficult for my Gp who thinks I have PD with the neuro Dr saying devinitively it's not , I am in no mans land really , am I right in thinking that stress makes you feel so much worse , because today I have had a really stiff and painful day .liz
Hi Maddison yes I have read the link it's interest that it says the dat scan can show if it's PD or essential tremor which I was diagnosed with over 10yrs ago , which back then I only had tremors which I have had for as long as I can remember and I am 55 now but didn't have all the other symptoms that I have now thanks for the link Liz
Hi Libby Jane,
You don't need to be referred you can just call the helpline number on the home page and a PD nurse will call you back within 48 hrs. And your GP can refer you to another neuro.
Yes stress is the worst thing for you with me it sets of my tremor also sitting down for to long and to much walking all adds to the uncomfortable stiffness pwp suffer it's part of our Non Motor Symptons. If you are in London I can recommend UCL opposite Warren street Tube station.
The Dat scan can visualise PD but is not definitive it's dx by seeing our Symptons and how we respond to the meds that the majority of pwp are dx. They will check hand and foot movements in a special way and a good neuro will know what to look for.
If you still have trouble I would call your local Primary care trust for advice.
BB x