Hi everyone, it’s brands! I thought I’d give everyone an update on my situation as a lot of people wanted to know how I was getting on from my original story post. I will link it here as it’s a bit of a long read for anyone who wants to know my full story: Early 20’s symptoms of PD
Basically, the short version is I’m 23 years old, I have diagnosed essential tremor and my maternal nana had Parkinson’s disease quite young (we think onset started in maybe her late 20’s/ early 30’s?)
Anyway, I have an appointment tomorrow morning with a doctor at my doctor’s surgery, it’s to test whether I have PD or not… I’ve finally been able to get a test booked in after a year of experiencing horrid early-stage symptoms…
I just wanted to ask my lovely PD community, who has been so lovely and supportive of me and each other … please can I have any advice, or tips, or anything I should know or say at the appointment?
Does anyone want to share their personal stories about how their diagnosis journey went? I really appreciate all of you, thank you everyone!
HI Brands I do hope it is not Parkinson’s that you have as you are so young, As far as I can recall there is not a test for Parkinson’s. The doctor though will perform a detailed physical exam, take your medical history. The doctor may send you for a MRI scan take blood test, How I found out that I had PD after going Bowling hubby and I were sitting in the sunshine with a glass of wine. my leg and hand started shaking So of cause my hubby said you have had to much to drink but i had not even had half a glass, Went to see my GP who sent me to see a consultant when i went into the room The consultant said walk to the door now walk back again then he said "“What you have you won’t die from but you have Parkinson’s” and that was it !! so I joined Parkinson’s UK and I get lots of help if needed
GP’s are not best placed to diagnose PD. If it is suspected, the best course of action would be to refer you to a Neurologist who is also a Movement Disorder Specialist. I would doubt that your GP would be able to refer you for an MRI and a DatScan.
I may just give up then. The gp I saw thinks I’m a hypochondriac and I can’t be bothered anymore. I’ve lost my hope for support after asking for it so many times from the NHS.
They’ve got me doing blood tests even though he said it won’t detect PD.
How am I a hypochondriac just because I know most symptoms of the disease because I’ve researched it because my grandmother had it for most of her life and died from it, and that I’ve kept a diary because that’s what she did. Absolutely ridiculous. I’m so done.
I know my body and I know what I’m feeling. I get more help from YouTube videos anyway. Don’t know why I bother trying to get help.
I’m not sure if my gp practice even takes me seriously so may give up trying to get help. I may ring the charity and see what they think but don’t know what to do anymore.
GPs will often run a battery if tests to see what the results are so that they can let the Neurologist know that they have considered other possibilities. Fortunately I had a slight resting tremor so was given an immediate referral. My Father and his Sister both had PD so I guess that was a factor. I was immediately diagnosed with PD based mainly on the resting tremor, bradykinesia and cogwheel rigidity and was then sent for a brain MRI and a DatScan for confirmation of PD and to rule out other Neuro problems. Some 14 years later, I have just had the brain MRI and Datscan repeated. The Datscan revealed a poker uptake of Dopamine and the MRI showed that I now have moderate Cerebral Small Vein Disease (with a number of diffuse small areas of brain death)
Play all with your GP. From her point of view it might be strange for someone to have nearly every symptom of PD in such a short period of time. Such rapid symptom acquisition might be more indicative of conditions related to PD rather than PD.
I get my ongoing treatment at the National Hospital for Neurology and Neurosurgery. They are probably best placed to assess more complex situations.
By the way, what have people who see you said about your PD Face? It is quite specific and usually never differs
Morning brands reading your reply please think about it?? its not the end of the world, let’s have a bit of positive thinking, Don’t let it control you!! I was lucky that out of our 6 GPs the one I saw knew about PD. looking on the other side when I went in to see one of our other GP the GP just said to me ""Well you don’t look like you have PD “” d-hhhh what are you supposed to look like? she admitted that not many of the GPs knew much about PD that’s why they refure you. Also think of all those famous actors who have PD we now belong to the elite class (So to speak) if you still have no joy why not think about asking your GP to refure you, must addmit it has got to the state where we are telling GP their job, but you have to talk the bull by it’s horns and think about your self. If you still find your not happy then change to another GP. If you find time do phone Parkinson’s Help Line they were great when i had a problem. Sorry to go on but most of us have gone though what you are going though, ps I have just changed GPs and went to order my medication the receptionist more or less told me that it would take a while to get it, I told her thatI had PD and needed it on time!!! she still stuck to the same story, but I was lucky the pratice nurse stood behind me and she had, had training in PD so she told the young receptionist that I must get my meds on time. Thinking about it PD is quite a new thing to GP surgreys and they have to learn about it, we who have PD can teach them a little. This is long winded but I hope it helps.
You could use the argument that it’s affecting your mental health and to put your mind at ease you would like to see a neurologist. If that fails consider going private for a consultation
… please can I have any advice, or tips, or anything I should know or say at the appointment?
