My life has come to a stand still


#1

Hi, I saw a neurologist 4 weeks ago, after doing a few test he advised me that he thinks I have early signs of Parkinson's. I was so shocked as that wasn't even in my mind for a diagnosis. It started about 6 months ago where I started with dizzy spells and loosing my balance on my left on side. Since then my symptoms have progressed my left leg gets really stiff when I am not mobile and I find it hard to turn over in bed. I get a lot of pain in my left leg and neck and jaw. My sleep pattern during the night is terrible and I am so exhausted during the day. I have my Datscan this Thursday and MRI  on the 14th.  I can't express how I feel.. Devasted!  


#2

Hi Denny

Good luck with the scans. It sure is a very scary time waiting for diagnosis. I wish you well and keep in touch. Scooby


#3

Thank you Scooby  


#4

Devastated is how we all feel at first, I think. My advice is to read as much as you can about PD and treatment - knowledge is power!


#5

Hi Denny, I am in the same boat as you and still a bit in shock. I am still waiting for my dates for mri and datscan. For me its the not knowing and waiting. Try to be strong. Let me know how the scans go.

 


#6

Hi Denny...It is a shock for you, and the not knowing is hard. I had felt poorly for several years and actually knew what it was as I am very naughty and looked up all my symptoms!!!!! So when I was eventually dx i felt a huge relief that at last there was a reason that I felt as I did. My poor Husband was in shock but after a few tears a good chat and a lovely cuddle we went dancing (our hobby). There are some very good meds and your Consultant or Nurse will advise you. Never be afraid to ask questions, find out as much info as you can. Also this site is amazing for support and sharing experiences, having a laugh or having a moan. There is always someone in fact most of us who have felt as you are now, whatever the dx you will cope and believe me you will carry on enjoying your life as before. Keep posting, keep positive, and most of all Denny...keeeeeeep smilng matey

luv Dolly x

 

 

 

 

 

 


#7

I can imagine how you must be feeling Denny. I am waiting for scans in Nov too and awaiting outcome. So many on here can relate to your feelings and care so no one would mind you asking anything at all I'm sure. Keep strong! Sue


#8

 

Isnt it wonderful we have the material too educate ourselves of every step and aspect as we go along from the first suspicion of this illness  too diagnosis, the drugs we take every day too the ones & developments that may come along in the future, Not only that we can share in each others experience and advice & worries or humour , we can and have the opportunity too shape our futures in decisions  and too take part in the research, where would We be without the resource.


 the Neuro told me nothing about Parkinsons' ,All i was given at diagnosis was a little blue  card and the words "you'll find all you need too know here". I had been doing all that already.


#9

Thank you everybody for your kind words. I have my DatScan in the morning...  I will let you know how it goes 


#10

Hope all goes well Denny. Mine is Nov.

Keep positive whatever the outcome!

sue


#11

Hi Denny I was diagnosed in August when I was 61 bit older than you but still young my symtoms are left side weakness dragging my left foot, balance problems and pain in my upper arms. This forum is a great this is a great source of info so please feel free to. Ask anything. Above all if you are diagnosed tell yourself this is a condition I can manage it's not going to kill me. Keep positive I know it's tough but this is a condition that can be successfully controlled x

How did the scan go ?


#12

Hi Taffy, thank you for the support. I was a wus at my DatScan I ended up passing out so embarrassing! I can't wait to go back to the neurologist and hopefully start on some medication. I am really suffering from aches in my jaw and neck and during the night my left leg. Does anyone else have these symptoms?


#13

Hi Denny,

 

Glad you go your scan over with OK. Well apart from passing out that is. tHat may be me on wed!!! I had my MRI today and didn't enjoy it one little bit so hope the datscan isn't the same. I just want to get it over with and get the results as soon as possible.

 

sue 


#14

Didn't like my MRI scan on the brain very chlostrophobic so you are not alone 

My aches tend to be around my shoulders so I exercise them every day and I find it helps also have pain killers from doc when I need them co-coda mol 500 mg

hope you get a Dx soon


#15

Did you have an injection with your MRI? The Datscan isn't bad at all honestly 


#16

I didn't have any injection for MRI. With the DaTscan I think there is lots of hanging about isn't there? I have a 9am appt so am staying near addenbrookes the night before. Didn't want to get stuck in loads of traffic and end up arriving in a total panic!!!


#17

Yes you have 2 tablets then 1 hour later you have an injection then 3-4 hrs later you have your scan.


#18

I will make sure I take plenty to keep myself occupied then!! 

Thanks denny


#19

Hi Denny and Lexi

 yes the neck, jaw and shoulders do get stiff and painful, I have exercises  that i do in the warm shower every morning plus accupuncture from my GP who is qualified and it does relax the muscles for a while. I have had PD at least since 2009 and was DX in Feb 2013 and what a relief it was to finally find out why I had been feeling so poorly for so long. The meds make a big difference and having the support of the Neuro nurses on the other end of the phone, and this forum is invaluable.

I also hate confined spaces and did not like the MRI but I have had several now for various ailments and just close my eyes and try and imagine I am somewhere else!!!! 

I hope you soon get your DX and then you can start enjoying life again , you control Mr parky...don't let it control you. 

best wishes and keeeeeep smiling 

Dolly


#20

Thanks Dolly. I just wish I could have one day we're I feel well. Does anyone suffer from internal tremors and is this a symptom?