I have been reading a lot here where people say they’ve seen Neurological Consultants and received a variety of tests and scans. This has made me very aware that I have had none of this treatment and am wondering why. I recently discovered that the doctor I am seeing is not a neurologist {I found out this as he is also treating my neighbour for COPD} I have not had any tests other than being asked to walk in a straight line, draw an object on paper, touch my nose and other similar things. By the next appointment I have it will be over a year since my last consult. The only time I get to speak to anyone {i.e. Parkinson’s Nurse} is if I make the contact. I know the NHS is not in good shape at the moment, but I am suddenly very concerned that my treatment is being sidelined. Am I right to be concerned? Should I have had better testing? Should I be seen more regularly? Would it be worth getting a private consultation?
Good morning Artgeek … I have had a positive Datscan, showing Parkinson’s is probable, but not certain. I also had a Brain Mri scan to check on other causes of my symptoms. I am 70 & was diagnosed with Atypical Parkinson’s just over a year ago.
I am taking Sinemet 2 pills 3 times a day. This has helped control my symptoms to an extent that I can lead a reasonable life.
You don’t mention your symptoms or whether you are on Parkinson’s medication & whether the medication helps your symptoms.
That is all there is really. Mostly dopamine replacement drugs. If the drugs help then you are where you should be.
My initial Neurologist was a locum from Armenia specialising in Neuropathy. He has since left the NHS so I do not have a Neurologist.
If you have the free funds to see a Neurologist specialising in Parkinson’s I think you would feel more relaxed & informed.
Diagnosis is mostly an informed opinion with a bit of guesswork thrown in.
Best of luck.
Steve2
Thanks. I don’t really have the funds, but would sell some jewellery if I thought it would help. I am on Pramipexole and Madopar. My tremors are not really under control. My legs are stiff and I often lose balance. My brain is constantly sending out messages that my body just ignores. I just think that the level of communication is not what it should be, and am wondering if it’s a postcode lottery over the testing and scans.
Stiff legs could be Neuropathy. Up to 55% of Parkinson’s sufferers also have Neuropathy. Usually treated by Amitriptyline.
Steve2
Hi Artgeek,
Diagnosis of Parkinsons is based on symptoms not on scans. DAT scans are only really done if there is doubt about diagnosis or in younger patients. Even a positive DAT scan doesn’t mean you have parkinsons disease, it could be one of number of illnesses that cause simliar changes.
Yearly follow up is the norm for PD if you’re lucky. The Pd nurses are there to help if you have problems and can titrate up your drugs if needed. Mine has been very helpful.
If you’re still symptommatic then talk to the Parkinson’s nurse/Docotr and see about upping doses or altering timings.
Not every Parksinon’s doctor is a Neurologist some are Geriatricians and specialise in Movement disorders such as Parkinsons disease. It doesn’t sound like your care is out of the ordinary.
Podd
Hello Artgeek - again you’ll be getting fed up with me keep turning up like a bad penny lol
May I suggest you contact the helpline 0808 800 0303 before you do anything else. They are very knowledgeable and helpful and have a lot of resources at their disposal. It is likely that in speaking to them you will have a clearer view of your situation, what your options may be and the very act of speaking to someone can in itself help. Their lines can be busy but do keep trying;. Some people do seem to go through heaven knows what over an extended period of time before getting a confirmed diagnosis and that can be a terrible and scary time when your thoughts can run wild and you start imagining all sorts. I would strongly encourage you to try the helpline first, don’t be thinking of selling jewellery or anything else yet. Also I know it’s asking the impossible when you are understandably worried but do try not to let it overwhelm you. There is no definitive test which says absolutely it’s Parkinson’s and it can take time to get it sorted. My feeling is that now you have have found the courage to post on the forum all your pent up fears, concerns and anxieties are spilling out and that’s absolutely fine if that is the case, it is a safe place to do that. And as you have found members of the forum will respond and try to help but rarely in the concrete way many new to the forum might wish . That’s a luxury Parkinson’s rarely gives, but we will always do our best to help and support you in any way we can. Here on the forum we may not be physically with you but you are not on your own.
Tot
Hi Artgeek good advice what Tot has given you there is not realy any test to say you have Parkinson’s, my test when I saw the consultant was walk to that door walk back again , I will tell you now you will not die from what you have , but you have Parkinson’s, this was in 2010 and he was right, Now for the last 10 years my hubby has had very much the same stytoms but what he has that i do not have is REM rapid eye movement. now he also went to see a consultant and was told that he was told nothing, so has he PD or not? Meds you are put on mostley madopar which comes in differant forms. don’t stress your self by going private as I think you will just be wasting your money. Like Steve 2 say give Parkinson’s UK a ring I have always found them helpful.
It’s definitely worth checking if you should be seeing a neurologist, especially if your current doctor isn’t specialized in neurology. Regular testing and consultations are crucial for proper management of Parkinson’s.
I have to agree. Diagnosis should be done by a consultant neurologist and preferably by a Movement Disorder Specialist. There is no reason at all that @Artgeek should not be receiving the best treatment available. Not only is a DatScan possible but a brain MRI would rule out some non-Parkinson’s conditions. If she is able to travel to London, she might want to get her GP to refer her to the National Hospital for Neurology and Neurosurgery (part of UCLH).