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Can anyone offer me any help please.

I have had PD for 11 years now, take Sinemet  CR 25/100 + Lysuride (Revanil)
200mcg, 4 times a day at three and a half hour intervals.  First dose of the
day I also take half a Sinemet LS tablet.  I suffer from the on/off
fluctuations whereby I can be fine for two or three days at a time with no
off periods, then I have a bad day where I can be off some or even all the
day.

The off periods vary a lot.  Sometimes they are short lived and not too
uncomfortable or disabling but sometimes they last a long time and I am VERY
uncomfortable with bad muscle aches in my thighs and lower back and and very
rigid all over with some tremor and I just don't know what to do with myself.
 I cannot lie comfortably in bed although that's where I feel I want to be.
 I had one of these sessions last evening and started to write to the list
for help but was so uncomfortable I had to stop.  So I am writing now whilst
I am OK.

I have to go for my regular six monthly check up with the neurologist on
Tuesday 29 April and wonder, before I go, if any one has any tips.  I just
can't imagine how people coped before the PD medication became available.
 When I have these phases I just tell myself that are not permanent and I
will feel better eventually.  The trouble is when I am like this although I
usually take a Sinemet LS to try and release me, it can take some time and
sometimes doesn't work at all.

I don't really want to increase my regular doseage or timings of medication
as I am afraid of overdosing since I have many good days (i.e. in a 28 day
period I recently recorded I had 14 days in which I had no off sessions and
14 days in which I had some off sessions of varying degrees).

I realise from reading the list messages over the last 4 months or so I have
been on the list that this is probably quite "normal" in those who have PD
for a few years so I just wonder how others deal with it.

Many thanks

Best wishes to you all

Susan 43/11
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