Quote:
Originally Posted by Niggs
Hi Soccertese
No mention of D.B.S, I think it's very much a last resort here in the UK. I'm in two minds re my Neuro, whether he's mad or a genius ! I pushed the care team to give a ball park figure for this latest adjustment. Guess what, they have a rule of thumb system which for introducing entacapone is give it a minimum of 4-6 weeks before they can say yes/no.
It is hard going mate but personally I would rather tough it out for 6 weeks than face surgery that has it's own problems.
Just as a point of interest, I have had, like you significant side effects with ropinirole. I now know it takes me two months + to settle a requip xl adj, generic are to be avoided and most of that time I'm feeling 'more' parkinsonian and constantly saying "this can't be right". But I'm wrong and now I'm actually getting somewhere.
Finally, I'm 7y post diagnosis and on 150mg 3 x daily + 12mg requip xl. I asked about lower more frequent dosing and was told not needed,hence mad or genius.
So far he's right and I'm so glad I weathered the storm.
Nigel
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Just as an example, three weeks ago I was on 3x 200 mg sinemet cr as my l.dopa element. 'On time' all over the place. My own 'tap test' is whether I can wash my hair using my left hand and whether I can pull the quilt over with fluidity.
I was put on Stalevo 150mg x3, accounting for the bioavailability of sinemet cr (70 - 75%) Within 3-4 days I'd lost the ability to wash my hair with the left hand and was 'unable !' to pull the quilt over.
Now, starting week four both the previous are back, I've set up a punch bag and weights and started training at long last. My 7.30 stalevo is now starting to kick in by 9.00am, 8.00am this morning and that lasts until 12.30pm.
The last three days, though an effort and a bit twitchy, I've been able to cook the family dinner when I'm up at 3.00 am.
It's not there yet but I'm impressed and hopeful now.
Nigel