Hi Janet...
Answers interspersed below. Thanks!
In a message dated 9/19/99 6:49:13 PM, [log in to unmask] wrote:
<<hi all
At 14:01 1999/09/19 EDT, barb wrote:
>Hi...can anyone tell me what is likely going on here? A problem
>which has been going on now for many, many months has gotton much
>worse on occasion recently. I need practice in describing it and
>feedback from my list cyber-family in preparation for contacting
my MDS tomorrow....
how many months has this been noticable?
BARB: I'm not sure...at least a year
has it become worse gradually?
BARB: maybe...but it seems all of a sudden to me
>I first noticed internal rigidity in my throat at nite upon going
>to bed. It usually was/is relieved by morning. Adjustments I made
>were to sleep with my head and torso raised. I think my MDS increased
>my Elavil in response to my report of this symptom. On a few nites
>it was so painful that I got up and played Solitaire games on my computer.
i'm not clear on how this relates to your pd
when your throat bothers you
I have trouble breathing and talking sometimes. I feel pain (much different
than a sore throat.)
is it at the same time as 'off' times with your pd symptoms?
I consider this a PD symptom. Other than dyskinesia, it is my most
aggravating symptom. It feels like someone is pinching my throat--and it;s
aggravated if I walk.
what are your pd symptoms like? see previolus answer Also, for about a year
I have been having back problems when standing.
how are they controlled through a 24 hour day by your med regimen?
On a good day, which has really been pretty often, I am "on" most of the day.
And until this last week or so, I could usually anticipate the reaction of
my meds and often time them to an event.
have your pd meds or your pd symptoms changed during the same
'many months' period of your throat problem?
I think this may be concurrent with the introduction of TASMAR, MIRAPEX, &
increase amount of ELAVIL.
>Recently (about last two weeks), I have started having incidences during
>the day whereby I feel my throat start to constrict, as it did yesterdauy
>afternoon and to a lesser degree around 11:15 a.m. today. I find it quite
>alarming. I think in most of these daytime incidences, it occurs after
>my usual dose of meds while they are kicking in. But I have audible
>breathing at other times as well. (perhaps before I take meds) Also, I
>have had incidents of worse dyskinesias.
what other aspects are there to your throat problem?
do you have trouble swallowing or talking or in any other way?
maybe your throat difficulty has nothing to do with pd...?
do you smoke? do you still have your tonsils?
I don't smoke and haven't had tonsils since age 8. I think swallowing would
be hard at the worse of it. My speech sometimes gets slurred when this is
going on.
>
The med schedule I have been following for some time is as follows:
>
>6:30 am arise
>7:00 1 xanax (0.25 mg)
>7:30 1 mirapex (0.25)
>8 2 Sinemets (25/100)
> 1 Tasmar (100 mg)
>
>11 to 12:30 2 mirapex
>11 to 1 2 sinemets
>
>4-5 1 xanax
>5 to 6 2 mirapexs
>5:30 to 6:30 2 sinemets
> 1 Tasmar
>
>10 pm 3 Elavils 25 mg
>
>I look forward to your input and/or questions. Thanks.
>Regards, Barb B-K
i'm a tad surprised to see that you are taking
sinemet plus mirapex plus tasmar
My MDS substituted Mirapex for Parlodel. I found Mirapex was hard to get use
to at first. We started the TASMAR when it became available. When the
warnings came out, I tried to stop...but had intolerable rigidity and needed
help from my husband to move esp. at nite. So I went back on it.
in addition, your dopamine intake looks quite roller coasterish
especially from 5 to 630 - that's quite a bunch all at once
I take 2 Sinemets once sometime during that time frame.
how did you and your neuro arrive at this schedule?
trial and error
how does this schedule relate to your ons and offs and dyskinesias?
on good days I may only have slight dyskinesia at end of dose. On bad days,
I may have peak dyskinesia that is annoying and a more noticeable spell at
end of dose.
how does this schedule relate to meals?
precedes all meals by at least 30 minutes
how long have you been taking tasmar and mirapex and sinemet all together?
about 1-1/2 years
what are the xanax and the elavils for?
see answers to K Holden
- end of phase one of the ja-net-inter-rogation! -
whew! :-)
Barb B-K 58/44
