Diagnosed in June 2015


#1

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.

 

 

 

 

 


#2

 

Hi

 i used to do a lot of walking as well, at work and after it, and it was apart from a tremor getting worse that i had ignored for many years that drew me too know something was a wrong, what would take me 5 mins too walk would take me a hour, i felt like i was walking for ever slower and slower never getting anywhere, i was also dead tired when i used to be full of energy, I also used too drop things at work, i'd gone from very strong too very weak with that heavy feeling in my arms of always carrying a bag of spuds around.


After diagnosis i started on sinemet and now on madopar with results, if you feel your regime isnt working it may be worth your while enquiring and switching?.

best of luck. 


#3

Welcome and thank you for sharing your story


#4

Hi Wood machinist your story has a very familiar ring to it apart from the speed as to your dx most pwp the dx can take a long time. I like you was dx quickly at age 47. 

The meds you are taking I have no experience of however this website is very informative as to all the med's used to treat pd. There is a lot that can happen after dx one thing is to keep an eye out for depression as that is very common for pwp, also the reason your arm goes into shake dance mode (pardon the pun)

is because stress the worse thing for us. My wish for you is a slow progression and meds that do there job I hope you stay positive but non the less there are lots of us on here to help guide you through this thing that has invaded our lives our common link via pd the uninvited guest will always connect us so sadly I must welcome to the club and hope to converse with you again should you wish to do so.

BB.  


#5

Hi sea angler,

Thanks for the reply, it's reassuring to know your not alone.  I see your the same age as myself it would be good to stay in contact to see how are condition compares/contrasts over the years.  

How are your hands?  With fishing I guess you require good dexterity.  I am having a few problems myself with trigger finger, finger can lock at around 90 degrees or more recently look more like the spock salute or nano nano.   It doesn't last long but hampers any work for a few minutes, unfortunately my right hand joined in for the first time the other day, If my treatment can prevent this l can live with my walking difficulties.

I don't have an appointment with the Parkinson's nurse until November, hopefully this will give me enough time to see if drugs make a difference or change my regime.

All the best.


#6

Hi Bettyblue,

Thanks for your response, it's good to hear other peoples views.  So far depression isn't a problem for me but I am keen to see a positive response to treatment.  

I can understand your frustrations with the site, some of the postings appear to be locked to myself as well.  Maybe it's a tactic to see how we all deal with extra stress caused by failing technology.

I don't think you should quit just yet though.

Keep smiling.

 

 


#7

Hi scooby,

No probs, it all a bit new to me but I am trying.

 


#8

 

Hi Wood machinist

Yes Angling is good exercise for the mind and body, i have had too admit defeat in endurance where i used to go for a week its now just when i'm up for it as long as i can stand it a few hours, but on the dexterity side i'm trying too keep that up, i don't think i'll be tying size 24 hooks lol if you can imagine trying too pass a hair through the eye of hook when the hook is the size of a ant lol, but keeping up the technical side of tying complex rigs and knots. I will still walk if i can too the beach or the other side of the lake it's all about beating this on our own terms an knowing we can still achieve & fills our personal goals.


all the best for November.


#9

Hi mate ,I was diagnosed in 3 weeks, June 2012 ,it didn't sink in with me for maybe 18 months.

I would say keep your head right and you will cope, remember its a very slow progression ,you wont wake up one morning and and see a big difference.

I go to a support group and every one of us have different problems ,no two cases are the same.

get in touch with your nearest group they can be a godsend 


#10

thanks for replying. I don't say much on this forum. I suppose I am not ready yet to tell my story although it is very similar to most other newcomers. i read a lot and I am grateful when others share their stories. Best of luck with everything. Scooby

 


#11
Hi gcy, Thanks for that I will have to try and contact my local group. However they meet at hopeless times for those of us still in work. Here's a hot potato for discussion. Our we doing enough to support young people and those in full time employment? I am all for meeting up with others for mutual support and discussions but it needs to be in the evening or at a the weekend. Fingers crossed.

#12
As you are now legally disabled your employer are required by law due to the disabled act to give you reasonable time off to attend any event that may help you or your condition.

#13
Hi Bettyblue, Good to see you are still with us. Thanks for that as silly as it sounds I hadn't thought/looked at it from that angle. However I have yet to officially inform my occupational health department of my condition.