Hi, just been diagnosed yesterday and a bit overwhelmed with the news to be honest. Neurologist was very matter of fact about it.
So now I’m awaiting an mri scan to rule out that it could be something else mimicking the symptoms, I’ll be started on a benzo something or other (Was still getting over what she told me and didn’t quite take it in) when I finally get to see my GP, 24th December, Merry Xmas lol
The letter I get will provide details of support services and local nurse specialist, but now just waiting.
Is this a normal process, just feels a bit like, here’s what’s wrong and then left hanging. I believe I’m only at the beginning of the process. Tremor in left hand and some minor walking issues.
Hello jdeans1973 and welcome to the forum. These early days are hard to understand and dificult to manage - you get a diagnosis then nothing seems to happen. This is the experience of many and does nothing to alleviate the concern maybe even fear you have for the future. Best and oft repeated advice to newbies on the forum as you will quickly discover if you look at a few posts, is to take a deep breath, don’t panic and go slow. You need time to adjust to the diagnosis and the dozens of questions, concerns of whatever that are probably going through your mind. The Parkinson’s UK site has a lot of info/advice for newly diagnosed people you may find this helpful https://www.parkinsons.org.uk/information-and-support/new-parkinsons-film-people-who-are-newly-diagnosed
Having said that think about what is important for you to know at the moment and concentrate on that as trying to take everything on board can be overwhelming and counterproductive. I would strongly recommend that you write down questions to ask your GP when you see him/her, don’t rely on your memory and make sure you understand what you are being told. Letters from hospitals can be slow so do follow this up if you experience this. Everyone’s experience is different although of course there are common denominators, and and systems do vary in different parts of the country so I can’t tell you how short of long your waiting time will be but what I can tell you because we have all been through it in one way or another, is that things do settle and you will get through it. The forum is an excellent source of support as is the helpline. My apologies if this is a bit vague and i hope it is at least a little reassuring. With best wishes, take care.
Hi John
Welcome to the forum - My husband who is 44 is mid diagnosis at present. It was a shock but I have found this forum a great help. You’re not alone and will always find friendly ears here ready to help. Take each day as it comes. It is a slow process and one of elimination.
So far we have had a 24hr urine test to look for copper and Wilsons disease which can mimick PD but that came back normal. He also had an MRI the result of which has just come back and he has been started on Sinemet. He has also been advised to have some bloods done for calcium and thyroid as the scan showed calcific deposits which again could be related to similar conditions. We are also awaiting an ophthalmology appointment in the new year.
It won’t be until he’s had all these investigations that we get an official diagnosis.
While the waiting has been frustrating, at the same time I do feel assured that the consultant is being thorough.
Don’t be afraid to ask questions. Write these down when you go to see your GP or specialist and note the answers. Once you get home its easy to be confused and forget what was said. Knowledge helps to remove a lot of fears.
Keep a diary - because this early stage is overwhelming it’s good to document everything as you may need to look back later and it gives you a timeline.
Don’t think too far ahead. Focus on now because that’s what’s important.
You are a fast learner Momyali and already supporting another on the forum, you have my admiration. At the end of the day that’s what the forum is about, sharing experiences to support others. You may not always agree with what is written, but everyone has a valid voice. I personally find that responding to posts I am drawn to for whatever reason, also helps me - it is satisfying and makes me feel useful. I hope you find the same, to me it is very much a two way street.
Perhaps Admin could confirm that the only positive diagnosis of Parkinsons is still a DAT scan? Momyali has stated so many tests beforehand that her husband has to go through before a definitive diagnosis… I find this incomprehensible. Is this the norm these days? We saw a consultant, he said Parkinsons right away when OH had very little obvious symptoms, just a slight tremor in one finger but, when asked to walk up and down, the diagnosis was given.
Hi Benji
This would definitely be helpful. The DAT scan is perhaps the only thing that hasn’t been mentioned by our consultant.
The consultant watched my husband walk across the waiting room at his first appointment and the first question asked was ‘does anyone in your family have PD?’ He carried out motor function tests - touching his finger to his nose, asked him to write something, made him open and close pincer grips on both hands. He said because my husband is 44 he wanted to rule out other conditions hence the MRI, ophthalmology and 24hr urine. As I mentioned there will also be bloods done for calcium and thyroid.
My husband has a very noticeable tremor in his left arm, freezes very often, shuffles when walking, doesn’t sleep well and is constantly restless. He has also had two falls.
‘Parkinsonism’ has been mentioned but not ‘PD’ as such.
It would be interesting to know if there is a standard way of testing these days.
These are the same initial tests that the consultant, not a Parkinsons specialist, a MND specialist, (our GP thought that was the problem),carried out when we had our first appointment. Walk up and down, touch nose with finger, pincer grip test, writing. My OH was just 47 at the time. I hope that the further tests that are scheduled give you a definite diagnosis very soon.
