Thank you for this information.

I find it very interesting that one of the side effects for Mirapex is
difficulty breathing. I'm just sure the increased dosage has caused this. As
for the joint/back/foot pain, she has tried a number of over-the-counter
drugs to relieve the pain, to no avail.

I will pursue getting another doctor's opinion. I'm sure it is difficult to
determine how each individual will respond to varying courses of treatment.
I believe family and, ultimately, the patient, are the best judges of that.

Thanks again for all your help - and everyone else's as well!

erin codazzi






>From: Charlotte Mancuso <[log in to unmask]>
>Reply-To: Parkinson's Information Exchange Network
><[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: doctors
>Date: Mon, 20 Jan 2003 08:48:16 GMT
>
>Erin,
>
>One of the possible but more common side effects of Mirapex is anxiety, as
>listed below. I copied the side effects portion of the disclosure and the
>web site.
>
>Whatever the cause or causes, it's treatable, as is the pain. Why not try
>the standard anti-inflammatory pain drugs--over-the-counter or
>prescription--I recommend she take prescription doses for the pain--for me
>that's what it takes to keep the pain at bay. But she needs to get a doctor
>to recommend what's right for her. Again, whatever the cause or causes, she
>doesn't need to be in pain or having physical symptoms from anxiety. Also,
>is she depressed?  Many patients present with depression before
>diagnosis--serotonin is affected by PD.  Again, treatable. Of course, all
>this is only my opinion.
>
>----------------
>http://www.gettingwell.com/drug_info/rxdrugprofiles/drugs/MIR1271.shtml
>"What side effects may occur?
>
>Side effects cannot be anticipated. If any develop or change in intensity,
>inform your doctor as soon as possible. Only your doctor can determine if
>it is safe for you to continue taking Mirapex.
>
>More common side effects may include:
>
>Abnormal dreams, arthritis, chest pain, confusion, constipation, decreased
>sensitivity to touch, difficulty breathing, difficulty walking, dizziness,
>dizziness upon standing, drowsiness, dry mouth, hallucinations, increased
>muscle tone, increased urination, insomnia, involuntary movement (jerky
>motions), lack of appetite, memory loss, nasal inflammation, nausea,
>swelling, urinary tract infections, vision abnormalities, weakness
>
>Less common side effects may include:
>Decreased sex drive, delusions, difficulty swallowing, fever, general
>feeling of illness, impotence, inability to hold urine, muscle spasms or
>twitching, pneumonia, skin disorders, thinking abnormalities,
>uncontrollable restlessness, unfounded suspicions, weight loss
>
>Rare side effects may include:
>
>Abnormal ejaculation, abnormal heartbeat, agitation, blood clots, blood in
>urine, blood circulation problems, convulsions, difficult or painful
>urination, enlarged abdomen, eye disorders, heart attack, heart problems,
>joint problems, lung problems, mental illness, muscular problems, prostate
>problems, severe chest pain (angina), thirst"...
>
>Charlotte
>
>
>---------- Erin Codazzi <[log in to unmask]> writes:
>
>From: Erin Codazzi <[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: doctors
>Date: Mon, 20 Jan 2003 07:23:49 +0000
>
>Thank you Charlotte.
>
>Her doctor was adamant about not putting her on Sinemet, which I agree, is
>the right approach. However, he's too quick to dismiss the other issues she
>has, including the pain and stiffness in her spine and feet. She has also
>recently become very short of breath. Her internist had a series of heart
>and lung tests performed, which unfortunately didn't uncover anything. He
>and the neuro concluded that she must be anxiety-ridden. That is very
>unlike
>my mom. I am convinced that this is PD-related or a side effect of the
>Mirapex.
>
>I've read about Baclofen and have wanted to her ask her neuro about it. I
>bought her an herbal supplement called Cat's Claw, which is supposed to
>help
>with osteoarthritis, if that's what she really has. She is reticent to try
>it however.
>
>I had not heard of a Movement Disorder Specialist prior to your email and
>Kathleen's. I will investigate this for her and I look forward to receiving
>more information about the non-profit organization.
>
>Thank you.
>
>erin codazzi
>
>
>
>
> >From: Charlotte Mancuso <[log in to unmask]>
> >Reply-To: Parkinson's Information Exchange Network
> ><[log in to unmask]>
> >To: [log in to unmask]
> >Subject: Re: doctors
> >Date: Mon, 20 Jan 2003 06:30:28 GMT
> >
> >One thing I'll say in her Drs. favor--he/she didn't automatically put her
> >on Sinemet, but is starting her out on Mirapex.  This shows, in my
>opinion,
> >an up-to-date approach. Garden variety neuros usually do the knee jerk,
>one
> >size fits all thing, and prescribe Sinemet, often in too large a dose.
> >Still, you might want to hear what a Movement Disorder Specialist has to
> >say.
> >
> >Fatigue is very common in PD and as a side effect of PD drugs.  And
>Mirapex
> >can pack quite a punch in many people, especially at first.  Sleepiness,
> >and a sudden urge to want to sleep often happens with this drug, and she
> >has just lost her husband and been told she has a progressive disease.
>And
> >as far as pain goes, this is very common in PD, though it's hard to
> >convince Drs., even PD specialists, that it is not just arthritis.  It
> >could be dystonia.  It is possible that Baclofen or quinine might help.
> >Some people take quinine for cramps in their legs or feet, some, as I do,
> >take Baclofen, which has helped me a great deal. It is one of the more
> >difficult symptoms to pin down, and many top PD specialists just don't
>buy
> >it--that is, that PD is directly related to these painful episodes. They
> >don't believe what hasn't been proven or taught to them. And it seems
>that
> >the elderly get this attitude most of all.
> >
> >There is a very fine PD non-profit organization in Oregon that deals with
> >issues for patients and their families, and PD advocacy of all kinds.  It
> >used to be called Will-Cope, and I can't seem to locate it's new name and
> >number.  I have a friend who is involved with it; I'll send her an e-mail
> >and get the org's name and number for you; I'm sure they can get the info
> >you need for your area.
> >
> >I'll get back to you,
> >
> >Charlotte Mancuso
> >
> >
> >---------- Erin Codazzi <[log in to unmask]> writes:
> >
> >From: Erin Codazzi <[log in to unmask]>
> >To: [log in to unmask]
> >Subject: Re: doctors
> >Date: Mon, 20 Jan 2003 05:47:06 +0000
> >
> >Thank you so much for your response.
> >
> >I too believe stress played a role in my mom's deteriorating condition. I
> >have been sending my mom to get massage therapy periodically; it seems to
> >give her some relief for a day or two. She has also seen an
>acupuncturist.
> >She is not keen on naturopathic routes, but I've been trying to encourage
> >her to try some herbal supplements I've read about.
> >
> >As for the doctor situation, this particular neurologist has impressive
> >credentials. Nonetheless I think we should pursue more aggressive routes.
> >We
> >live in Portland, Oregon and the Oregon Health Sciences University is
>known
> >for groundbreaking research in many areas.
> >
> >If anyone has any recommendations for doctors to contact in our area,
> >please
> >pass them along.
> >
> >Thanks again.
> >
> >erin
> >
> >
> >
> >
> >
> >
> > >From: Kathleen Cochran <[log in to unmask]>
> > >Reply-To: Parkinson's Information Exchange Network
> > ><[log in to unmask]>
> > >To: [log in to unmask]
> > >Subject: Re: doctors
> > >Date: Mon, 20 Jan 2003 00:27:18 EST
> > >
> > >In a message dated 1/19/2003 11:56:02 PM, [log in to unmask] writes:
> > >
> > ><< My question is whether we should continue pursuing other opinions
>and
> > >trying
> > >alternative courses of treatment. >>
> > >
> > >Hello,
> > >
> > >In answer to your question, most emphatically yes! Has she been seeing
>a
> > >"garden variety" neurologist? If so, look for a movement disorders
> > >specialist, someone who really knows PD. It sounds like her treatment
>so
> > >far
> > >has been rather perfunctory.
> > >
> > >Your dad's death must have been hard on both of you. Stress may have
>been
> >a
> > >factor in the emergence of your mother's symptoms, and depression might
> >be
> > >contributing to her decline. Many PD patients struggle with depression
> >and
> > >medication can help.
> > >
> > >There are other things that help too -- exercise, massage, a healthy
> >diet.
> > >If
> > >you stick around on this list you'll find lots of resources, ideas, and
> > >support. There also is a separate caregivers' list; I don't have that
> > >information handy right now but I bet someone else will post it for
>you.
> > >
> > >Do let us know how you fare in your quest for better treatment for your
> > >mother. If you let us know the area where you live, maybe someone could
> > >recommend a doctor.
> > >
> > >Wishing you and your mother better days ahead,
> > >
> > >Kathleen
> > >
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