Hi,
This is my first posting on an online forum and since diagnosis l have been forced to join twitter, who knows face book could be next.
I started having noticeable symptoms around October last year. I was feeling as if my left leg was tiered/heavy and not doing what I wanted it to do. This gradually got worse and I noticed I had started to drag my foot, I started counting how many paces I could do before a drag, you can get very hung up in working out what causes a walking disorder. I had been a very fast walker and was slowing considerably, with discomfort flowing from the knee down to my foot especially bad at the end of the day, I actually wondered whether I had forgotten how to walk properly. Being a man I kept fairly quiet and thought it best to see how it progressed so waited until after Christmas to seek medical advice.
My GP thought I may be suffering from arthritic knees, put me on anti inflammatories and sent me for x rays, these came back clear. I managed to get some Physio too, which was good but some of the exercise caused my leg to shake like mad. The drugs and Physio were not working so I wondered if it was referred pain from my spine as I had some symptoms that were common, the feeling of a wet knee pulling on my clothing while walking, numbness etc. Asked GP for a referral to a spine specialist or neurologist. When I got the letter from the hospital an appointment had been provisionally made for June.
This felt like too long for me so, large intake of breath I went privately (self funded) this resulted in a consultation in under a week. The Dr gave me a thorough examination and noticed I walked with a spastic gate (a term still used in medicine) and had an inability to shrug my left shoulder. I had a full MRI of the spine which came back showing a few bulging discs but nothing to cause my symptoms. This time referral to a neurologist also privately.
Another examination and told to have MRI of brain, I discussed possible conditions that would cause my symptoms and Parkinsons came up. The brain scan showed some issues but was not conclusive so I was booked in to have a Datscan (SPECT) so I was made radioactive in the search for dopamine. This scan came back with conclusive images of dopamine depletion in the right side of the brain and a reduction on the left side of the brain. June 18th Dr informs me that the results would indicate the likely hood of Parkinsons at around 90%.
For anyone interested in costs a MRI brain scan will cost around £600 with consultation and a DaTscan will cost around £1100.
After diagnosis I returned back to the NHS for care (same Dr).
I was prescribed Rasagiline to start with but after 2 months I haven't seen any improvement. I am now on Ropinirole as well and I am hoping for some improvement.
I have tried to keep this short but have failed miserably, I should mention that I have other symptoms that became more apparent during the diagnosis procedure. My left hand fingers wobble, left arm doesn't swing when walking, arm feels like it has been stretched after carrying a heavy suitcase and I now realise my ambition to play a drum kit is hampered as I can no longer tap out a beat with my left foot. I can feel very restless and have noticed breathing issues when sitting for long periods. I do have tremors though not often they appear to come especially when under stress.
I work in a practical environment and my lack of dexterity is becoming very noticable to me. I am hoping these drugs will help me.
So that's my story, keep positive.