Shocked and uneducated -Help!

Like others on this forum, I was sent to hospital with what I thought was a trapped nerve, it was just irritating and kept me awake at night. I am a 52 year old, very active and social woman who I can honestly say had fully embraced life. Due to Covid restrictions, I was told to attend my appointment alone, I had absolutely no idea that the Consultant was going to give me the diagnosis. He then asked me if it was ok to give me my test results over the phone; again I was totally unprepared. He was telling me that it was a little worse than he thought and both sides of my brain are affected - what does that mean? He has put me straight on the tablets and I have been on full strength since November. I feel dreadful! The fatigue is the worst couple with nausea. It’s stopped my tremors but I feel like my body isn’t capable anymore. I’ve gone from being able to jog pre lockdown to being unable to go for a long walk. All my bones ache. I can’t see the consultant again until April. So need your help, what can I do? Is it common to feel this way? My GP told me she was shocked at my diagnosis but wasn’t a PD expert and I should wait for my next appointment.

Hi @Heffers, my heart really goes out to you, and so many of us who went to see the consultant totally unawares of what we would be told. Then we get left to cope alone! Thank goodness for the forum and Parkinsons UK.
As a 55 year living life to the full, woman I too am struggling with the diagnosis if I dare admit it to myself. Because it affects everyone differently I feel we are so very alone in this although all are supportive, but as a scientist I need to have tangible facts!
I am sure others will provide words of wisdom and comfort, i read those every day here on the forum.

Hi @Heffers,

Welcome to the forum. I’m very sorry to hear this has been your experience so far. I can definitely understand why you feel like this - especially as someone who is new to the diagnosis. You have come to the right place though and are in good hands here with this community.

Others will be along shortly to share their opinions and experiences with you, but in the meantime, we do have some great resources that might interest you, particularly the newly diagnosed section of the website as well as the treatments and support pages.

You can also contact our Helpline and Local Adviser Service on 0808 800 0303 or email: [email protected] where we have specialist nurse advisers who will be able to discuss your concerns, and our helpline and local advisers can also link you in to support in your area.

Remember - you are never alone.

Best wishes,
Forum Moderation Team

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Hi.I also sorry that you were no t prepared for your diagnosis and alone. It must have been very hard for you.
The side effects of the medications are excessive sleepiness, falling a sleep suddenly and nausea.
The Neurologist Department at the hospital should give you the name and contact details for the Parkinson’s nurse. You cancelled and book a telephone appointment. It is usual to be prescribed anti nausea medication when first taking Parkinson’s meds. The nurse can email your Gp. to prescribe the meds you need and also a reduction in the dosage.
The Par nurse on this site will be able to give advice, don’t wait until April.

Sorry meant to say you can call then.

Thank you for this. Just finding this forum has already made a difference. I’m definitely contacting my consultant tomorrow and asking for a closer appointment.

How do you get allocated a Parkinson’s nurse? Is it GP or Hospital? Again, I feel foolish - didn’t even know there was such a thing

Hi @Heffers, Welcome to the Forum. The Parkinsons Nurse info you should be able to get from your GP Surgery, i’ve said many a time on this Forum that they are worth their weight in Gold they are so full of information and can guide you in the right direction. As @joy.mod has indicated there are plenty of folk on here ready and willing to help with any questions you may need to ask, you’re never alone on here. What I do recommend is that you speak to your Consultants Secretary and tell them what you’re experiencing and see if they can’t reduce your medication or offer alternative advice. Take care & stay safe.


Hi Heffers my diagnosis and the way you were diagnosis practically mirrored my situation i was an active 50 year old part of at one time a mountain rescue team running my own landscaping buisness a very active lifestyle i was diagnosed 2013
I have suffered with back pain and an an injury over a number of years priorto the Parkinsons diagnosis i was actually told at an hospital appointment for back pain i had Parkinsons then reffered to a Parkinsons consultant who has never discussed or considered my back injury trapped nerves etc.
The last 2 months i have had extreme trapped nerve symptoms with both arms numbing and pain constanlty in the spine but i accepeted it was all Parkinsons so i was given stelevo 4 times a day sinimnet at night time and Madopar i became so depressed tired and gained weight so fast basically lost the will to leave the house and sofa. I totally accepted the Diagnosis and my life had drastic changes due to the medication Then about 12 months ago i decided to challenge the medication i was on and the fact i was in terrific pain with my trapped nerves and lack of sleep I approached the GP which was a total waste of time as they have limited PD understanding the GP just prescribed painkillers more meds.I was frustrated as i couldnt tell which was Parkinsons symptoms and which was Back and nerve problems and my consultant was not willing to help me as he was rightly concerned with only my PD. I was in so much pain and so depressed i decided to challenge my PD diagnosis and re visit my back pain and my MH I went to see a Chiropractor and he identified my trapped nerves and he also helped me understand how pain and nerves affect my tremors what the difference is in the way i sit sleep and move I revisited the PD nurse and consultant and quistioned my meds I am now of half my meds and found out my blood pressure meds were clashing causing fatiuge. I looked at my diet and saw a dietician started to eat right and explored my MH and how i can restart my life situation I must be honest i explored Alternative medicine which were not encouraged to do by the NHS and yes , i have Parkinsons and its progresssing all be at a slower pace i feel much better able to cope with my pain and PD I am not say i have all the answers and i hope this has helped you in some way

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I have just been through a 20 month period of being pushed or fobbed off if you like by various consultants and GP. It is all to do with debilitating back pain. Neurologist said let’s get you a spinal referral GP delayed request for months. Then got seen on 9 March 2020 at spinal assessment. Outcome only discussed lower back due to that being all the GP wrote on the referral. I have changed GPs but that is whole other long post.

Anyway outcome of assessment required urgent MRI, we then went in to lockdown. Despite chasing via hospital team and old GP got no where. Even got a second letter saying MRI was not urgent but routine. Hit the roof sent all correspondence to hospital and GP. The GP first to respond there is nothing I can do we will just have to wait. I asked to give a reason other than COVID why 2 letters dates 6 weeks apart went from urgent to routine and can he take it up with spinal team at the hospital. When he said no, that’s when I changed GP last straw after 4 long years of in action and lack of concern the he was suppose to be part of my clinical care plan.

Hospital not quite so dissmissive and would look into it, response human error. Now I know what was said at the appointment and I was issued with a card stating RED flag symptons go to A&E do not pass go. Responded to letter and asked for further help.

About August I found a lump straight to new GP and referred for scan of testicles. Fortunately all ok just a calcium build up nothing to worry about. Whilst new GP gave me the results I mentioned on going wait for MRI. He started pushing and had requested a full spinal MRI, which took place in October at a private hospital but funded by NHS.

Decide to go to A hospital of my choice who mentioned the concerns on the scan, 10 bulging disc, sciatica both sides, spinal stenosis and scoliosis, during a telephone appointment. They had a meeting in November, operation highly likely and decided my cervical area needed to be rescanned. Had that towards the end if December, they had a meeting between neurosurgeons and orthopaedic decided not a suitable candidate for surgery due to neurological reasons affecting my spine needed to be resolved. Outcome back to neurologist. His response let’s get your GP to refer you to the pain clinic and I will see you in March as planned. So back to the starting point.

Waiting now for pain clinic (sometime) and neurologist in March. I think I have probably lost the thread of why I am responding. But I guess it is never give up, you are in charge of your treatment plan and keep asking the questions you want answered and challenge when you need too.
Apologies for the very long response which may also be off track.

Stay safe & well :sunglasses: