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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 > > > > > >---------------------------------------------------------------------- > > >To sign-off Parkinsn send a message to: > > >mailto:[log in to unmask] > > >In the body of the message put: signoff parkinsn > > > > > >_________________________________________________________________ > >The new MSN 8 is here: Try it free* for 2 months > >http://join.msn.com/?page=dept/dialup > > > >---------------------------------------------------------------------- > >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 > > >_________________________________________________________________ >MSN 8 helps eliminate e-mail viruses. Get 2 months FREE* >http://join.msn.com/?page=features/virus > >---------------------------------------------------------------------- >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 _________________________________________________________________ The new MSN 8: smart spam protection and 2 months FREE* http://join.msn.com/?page=features/junkmail ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn