Hello Reah,In February this year I was took of all my PD meds because my tremors vanished,and I quizzed my consultant about his desicion to say I had PD and him treat ing me with co-beneldopar,he looked a bit worried when I asked him why he didn-t send me for the brain scan before he started bombarding me with strong PD tablets,that’s when he took me off of them all,and still I have not tremors,on seeing him again in May he said he’irganise s scan for me to finalise the desictioñ,he still has not organised it,also another neurologist says she don,-\t think I have PD ,so I know I have been wrongly diagnosed,let’s hope the outcome of the elusive scan might tell the truth ,bye?
How frustrating and confusing this must be for you. I’d go back to your doctor to chase him up your scan as this really isn’t on. If you need some advise on how to manage this situation, I’d recommend you give our helpline a call on 0808 800 0303 and speak to one of our advisers.
I am replying to your email as I can’t see how to compose in a new field.
I was diagnosed with PD 2 days ago and to say am in shock would be an understatement. I’ve always been active and very sociable - I exercise and lead a healthy life style. My arm started to tremor in October 2017 and I’ve seen a neurologist a couple of times who was very dismissive and just told me I might have the early onset of PD. Not happy with this I sought a private PD consultant who confirmed to me a couple of days ago that I have early onset PD. I am 53 years old and although I hear you all saying to remain positive at the moment I am really struggling with this.
Can you please suggest what my next steps should be. I feel that my GP is not really being supportive so I don’t know if I should be taking tablets.
I really appreciate your support and look forward to hearing from you
Welcome to the forum. Your first port of call should be to find out where your nearest Parkinsons Nurse is, your GP Surgery should be able to furnish you with the details. This person will give you all the help and advice/support you need, tell them of your experience with the Neurologist and GP and see if they can recommend someone else for a second opinion. In the meantime don’t change your lifestyle because of the diagnosis carry on doing what you do best to the best of your ability.
Knowing you have the disease does come as a shock to the system but you mustn’t let it get you down. My personal coping mechanism has been to always make light of it, poke fun at myself, you will be surprised how it puts people at ease. Yes, when some of your friends find out you have the disease they may well shy away from you, don’t take it to heart, it will happen and those people won’t be worth bothering with. Your Neurologist is the one who should have put you on medication if he felt you needed it. You may well get put on something else as we’re all different but for tremor I am on Madopar. I have a Deep Brain Stimulator fitted as well.
Jennie, we are all in the same boat and on here you will get plenty of support, we are here for you. Anything else that troubles your mind don’t be afraid to speak out we are all ears. In the meantime take care of number one. All the best.
So happy to see that you’ve already received a warm welcome from @cruisecontroller. I think the advice he has given is spot on, the only thing I would suggest in addition to his advice, would be to check out the ‘newly diagnosed’ section on our website.
It has a full range of information including the type of support that is available to you plus an introductory guide that you can download. You can find this here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.
Our helpline is hear to answer any questions you have about your recent diagnosis and life with Parkinson’s.Call us on 0808 800 0303.
Do take care and I’m sure you’ll hear from others members soon with more great advice.
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Hi Jennie2, Sorry for the late reply. Its certainly a big shock when you receive the diagnosis. Like you already been told the Parkinson’s nurses are the best help and advice, but as you’ve found there are some really nice people on here who will help you and chat with you. Parkinson’s affects everyone differently but all you can do is try to be positive and get on with life. I have found exercise really helps and its amazing how understanding people are when they know. If you want to chat or have any questions, not that I have all the answers just message me.
Hello Reah,had the scan,it shown no sign of Parkinson’s,but i’m on the low end of being normal,my neurologist says zI may get PD in a couple of years,bye.
Thanks for the update on this. At least you now have somewhat of a definitive answer and you can still continue to use the forum.