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PARKINSN Archives
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I developed Neuroleptic malignant syndrome in sept 08 and was in a coma for
2 months on total life support. I was taking my meds on time andthey are not
sure how it trigeered. I had dbs in 2004 and it may have had something to do
with it. No one is sure. Be careful with all your meds. Research them and
aask questions. I wish you alll the best.
Beverly Forte
----- Original Message -----
From: "Maureen Potts" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, January 11, 2009 5:37 AM
Subject: Re: question re dosage
> Do not ever, and I mean ever, go off your medications without telling your
> doctor. You can develop what they call Neuroleptic Malignant Syndrome,
> where your blood pressure goes sky high, you pass out, and worse. Some
> die. Drugs for Parkinsons are pretty strong stuff. You are taking your
> life in your hands by not being more disciplied about your medications.
> You are tempted to phase out the drugs because you feel better. But it is
> the drugs that are making you feel better. Trust me, the day will come
> when you will be infinitely grateful for those drugs.
>
> My brother bought me one of those big plastic pill boxes with compartments
> for every day of the week and for a daily schedule. It helped me remember
> and to take my drugs on time. You have to commit to counting and sorting
> for an hour or so a week. It is well worth it.
>
> Please dont stop your meds without medical advice. Just remember,
> Neuroleptic Malignant Syndrome. Sounds awful, and it is.
>
> Maureen Thompson (I have been around, just quiet)
>
>
>
> ----- Original Message -----
> From: "Murray Kastner" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, January 10, 2009 10:24 AM
> Subject: Re: question re dosage
>
>
>>I am afraid I am the laggard of the group and the spacing of my dosages
>>has been all over the clock. I have been prescribed 25/100 Sinemet three
>>times a day along with 75 mg Mirapex and 5 mg Selegilene. I also take
>>Flomax CR (1x Day)and Novo oxybutnin (1x day). 1 mg Folic Acid, calcium
>>2x daily. i am very erratic in taking the meds, and try to keep to three
>>times a day but no fixed times. And I usually forget them altogether one
>>to three times a week.
>>
>> I am sorely tempted to give up the meds completely, or to phase them
>> out. I think I have read that there are cases where the meds contribute
>> to the symptoms rather than alleviate them. I also have osteoporosis for
>> which I have just completed an 18-month program with Eli Lilly's new
>> drug, Forteo wherein I injected myself every morning. This past week I
>> took a bone-density scan and Wednesday I am hoping to get the results,
>> expecting 20-25% increase in density. This may allow for spinal surgery.
>> which I am not too crazy about.
>>
>> My worst symptoms are camptocormia which means I cannot straighten
>> myself when standing or walking. I can lay down perfectly straight and
>> semis-straight when sitting. But the camptocormia has brought on
>> shortness of breath, especially if I walk without a walker. It has been
>> suggested that my bent-over posture has been crushing my lungs and so I
>> also now have a 'puffer' 3x a day.
>>
>> I am growing weary and am tempted to give up all the meds and see what
>> happens. Before I do that I will enquire as to the consequences.
>> Fr'instance: can the PD and accompanying symptoms get worse with no
>> returning to the meds to regain the balance I have now?
>>
>> I will discuss this with my neuro at my next visit -- scheduled every
>> 4-5 months. since 1998 the only deterioration I have experienced is the
>> damned camptocormia, apparently a rare condition which my neuro (one of
>> two movement disorder specialists in Montreal) has seen only in 3-4
>> others. He feels it may have been triggered by a fall I took a couple of
>> years ago which crushed 1-2 vertebrae when I landed on my coccyx.
>>
>> Phew! Thank you for bearing with this. I have probably left out even
>> more meds, like the anti-depression pills (150 mg) bupropion SR.
>>
>> Every once in a while I wonder whether I really have PD or whether it is
>> something with similar symptoms.
>>
>> Anyway I think I have rambled on enough and will appreciate input from
>> anyone in a similar situation.
>>
>> Murray
>>
>> Ray, I received the pins and they are already being displayed all over
>> Montreal. Thanks!
>>
>>
>>
>> On 6-Jan-09, at 6:33 PM, rayilynlee wrote:
>>
>>> I recently got some carbo/levo from my neuro to try once more. When I
>>> first tried it it helped but never again even tho I took it for a year.
>>> He gave me 25/100 3 times a day and I've forgotten how you space the
>>> dosages. Do you take it at night or just daytime? I've forgotten.
>>> in 2003 I had DBS and tried Comtan and Stalevo afterwards but it
>>> didn't help.
>>>
>>>
>>> Ray
>>
>> ----------------------------------------------------------------------
>> To sign-off Parkinsn send a message to:
>> mailto:[log in to unmask]
>> In the body of the message put: signoff parkinsn
>>
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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