Hello, i am new to this site and looking for a little advice. I think my husband is about to be diagnosed with PD (aged 45). Went to see his GP as he was walking slightly strange. Refered him to orthopaedic surgeon who carried out scans and all came back normal so refered him to neurologist. He has senn him twicw now in total. After initial consultation he had a range of blood tests and MRI which all came back normal. At the 2nd appointment consultant talked about him having a progressive degenerative condition but would not say what! Wanted him to have a DAT Scan to confirm his thoughts first. We had seen the consultant using our private medical insurance who will not pay for the scan. Consultant said he would transfer him back to the NHS but he would still not be able to have the scan as not available on the NHS but he would see him in november. I have managed to convince my husband to arrange another private appointment with the consultant as i feel we should know what diagnosis he is thinking. I strongly believe that it will be PD but have not yet discussed it with my husband, although intend to before the appointmnet on thursday. Does anyone know how to go about getting a DAT Scan? Is it available on the NHS? Can you pay for it yourself and if so how much does it cost? Think that my husband might need the scan to help him accept the diagnosis if it is indeed what i suspect.
Hope all of this makes some sort of sense. Any advice would be greatly appreciated.
Many thanks x
hi jasper,i like your hubby had scans 5 in total with nothing conclusive i was then seen by my 1st neuro`s colleague (the walton centre)who was 99% sure it was pd but would send me for a dat scan at aintree hospital now its been 2 years since i had the radioactive isotobe and no special powers nothing tv has lied to me
the up shot is you can get dat scans on nhs
it was enough proof to pay out my critical illness on my mortgage
Datscans are available on the NHS. They are expensive and are not done routinely. However if the patient is quite young and the neurologist is unsure of the diagnosis they are more likely to do a datscan. It all depends on your neurologist and NHS trust and as usual is down to finance. Also datscans are not 100% accurate and can give a false negative meaning it shows no sign of Parkinson's but the patient may still have it.
...from memory, when looking at a private healthcare price list, my daTscan cost around £2,400
The DaT scan may unfortunately give a false positive. I.E.you can be told you have pd, then subsequentley (presumably because meds are not working) told that you have not. However, it is the best physical diagnostic available at the present time
hi anneberte. i wonder can you help me. I was told by physican that i had pd and started on mirapexin. 6 months later saw the neurologist and said i did not have pd . i will go for dat scan in november. the funny thing is the mirapexin really helped me and i was on a tiny dose. I have chronic fatigue syndrome for a number of years. Just wonder whats going on ????Hopsticks
hi annebernadette. i wonder can you help me. I was told by physican that i had pd and started on mirapexin. 6 months later saw the neurologist and said i did not have pd . i will go for dat scan in november. the funny thing is the mirapexin really helped me and i was on a tiny dose. I have chronic fatigue syndrome for a number of years. Just wonder whats going on ????Hopsticks
hello hopsticks,I am not a mediically qualified practitioner, so can only guess as to what is going on for you. You really have to be guided by your neurologist. I would imagine that you are to have a DaT scan to clear up any confusion as to whether or not you do have pd. Especially as the mirapexin seemed to benefit. The DaT scan will give a measure of the dopamine transporters assoociated with dopamine cells in the brain. Whilst not 100% infallible, it is the best available diagnostic test for pd.
pd can be difficult to separtate from other conditions. It is possible that some of your CFS (about which I know little) symptoms e.g. muscle & joint pain, muscle weakness, led your physician to diagnose pd. I do find it odd that your physician (your GP?) prescribed mirapexin prior to your seeing a neurologist, but it is not unheard of (as I have learned from this forum)
You will find several cases on this forum of people dx with pd & subsequently told that they do not have it. And vice versa. It is distressing. No-one wants to be dx with pd but neither do they wnt to be in the limmbo land of "Have I or haven't I.
I do hope that you get a dx soon, one way or the other so that any appropriate treatment can be started.
I wish you the best of luck
thanks annebernadette for your advise. My gp sent me to a physician who has a special interest in parkinsons and he commenced mirapexin immediately. I waited about 6 months to see the neurologist and he said i should never have been started on any drugs and i don,t have pd. confusing, what do they say; doctors differ and patients die. Certainly hope not but its lovely to have a chat like this about any worries. Thanks again , hopsticks
I had a similar experience but with a different outcome.When I saw my neuro I went privately but it was a second visit as 2 years previously I'd seen one who'd diagnosed essential tremor.When my walking began to change I decided to see a new Dr. He did a thorough assessment but told me he wanted me to have a DAT scan. When he saw I'd paid to see him myself, he said they were mega expensive [thousands?]and I'd better have it on the NHS-which I did! My GP referred me to him on the NHS now.
However I asked him straight at this consultation if he suspected PD as I'd done some background research. He became very uncomfortable and then said yes.I got the impression that some docs.don't like to say until absolutely sure, but you can always ask. Fair enough on their part, I guess.
As for DAT scans on the NHS,definitely! Maybe ask your GP for a referral to a different Neuro.
If it is PD btw I now know is that it's different for every person, that there's a huge amount of research going,and it can take many years to develop.So don't lose faith!
Love and best wishes,