Day of days


#1

 

Well after a year long wait, I saw my Neuro today.

I arrived early( i dont like being late for anything) and there was hardley anyone else waiting around, after a few mins my neuro appeared and called me in, he spoke about the investigations during the past year, then onto my 'dat scan'  he explained the pro cess of the scan, then explained mine.

So i am offically diagnosed with Parkinsons, deep down i knew for the last year that something wasn't and isn't right a feeling inside me that my bodys telling me, it was a relief too be finally told that is what it is, and massive weight off my mind of uncertainty.

So im going too be started off on 'sinemet' twice a day for 2 weeks then 4 times a day there after, and i think i keep taking the other pills for now. and then back too my neuro, i was also informed that i'll be seeing a parkinsons nurse as well

Apparently i should of known the results of my scan a couple of months ago, but in error the letter wasn't sent too me, and only too my Gp, who only hinted at a couple of weeks ago when i went too see bout my eyes. but not officially.

i just have the dvla/insurance too inform and the dwp(atos) on monday too fight for some support rather than dissmissal.


#2


Hi sea angler, a  diagnosis at long last. Hopefully you will now get the medication and support you need. My husband started on Sinemet and is doing well on it. Best wishes, flo


#3

hi flo 

Yes at last, i'm looking forward too starting the medication, rather than medication that's not entirely for the root of the problem, i also hope optimistically it'll be plain sailing.


#4
Hi sea angler. As an undiagnosed, to know what the problem is must make a big difference. I hope it does go smoothly for you. I have a hospital apt next week. flo

#5

 

hi flo

Yes it has made a huge difference no more wondering, just the problem in hand now ,

when i first went on my first appointment by the end of it i had been told this is what we are investigating, he gave me no info  or paperwork other than the word, we have too educate ourselves, but deep down i had that feeling inside of me that something was wrong more wrong than just a simple tremor.

Best of luck too you next week and anyone out there starting their journey or close too diagnosis


#6
Well im glad in a way to hear this, obviously I dont want anyone to have parkinsons but when you know something is wrong it is good news getiing a diagnosis! I hope the medication is helpful. How long do you think they have known you had it? Im feeling like ill never find out for definate whats wrong. Good luck with it all x

#7

 

hi suzy

i hope you and other's find out soon it is horrid not knowing, certainly worse than knowing, my dat scan was 22nd of july, my neuro knew on 1st of august, my gp practice 100 yrds from my house knew 7th of august, i was last too know october 1st. my gp didn't think too call me in for a chat in august.

I am relaxed about knowing now, i am however anxious about whether i am going too get the support promised, i have a appointment in the morning with my gp too disscuss what the neuro has said and finally start some sort of medication for it ~ sinemet.

i should see a parkinson's nurse sometime soon.

I think deep down i might of had this for quite a while i have had a tremor for quite a few yrs certainly more than 15, when i was a teenager my first job was working on a farm, i handled a lot of pesticides/herbicides and a lot of the farmwork involved chemicals in one form or another.

my datscan revealed dophamine loss on both sides of my brain so it was abnormal.


#8

Thats so bad they dont tell you straight away, I never understand how they dont seem to realise how hard it is waiting for possibly life changing test results, ridiculous!  Yeah I hope you get all the support you need as well x


#9

 

It's a comedy of error's Suzy.

the other day i went too hand my prescription in at the surgury, i explained i'd be starting on sinemet and they confirmed they'd got the letter from the neuro saying so, my prescription would be ready by weds morning they said.

tuesday i got a call could i come in too disscuss medication on thursday so i didnt go and collect weds, after the appointment this morning the doctor said your sinemet will be ready too pick up on your way out.

but alas at the pharmacy no pills have yet been ordered. so i have too wait yet another 2 days for them too arrive.

I'm hopeing for a better performance when i see the PD Nurse.


#10
Grr makes me so angry how backwards everything is and how hard it is to get anything done!