helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Beau's Mom

Second Opinions

9 posts in this topic

I am newly diagnosed but have had symptoms for about 10 years. I've seen my neurologist 3 times over 3 months, and now he has me set an appointment for 2 months. He has given me samples of Mirapex .75 to take once a day, but it hasn't helped yet, and I don't have enough samples to last for 2 months. I don't want to wait another 2 months to see him. I still have lots of questions and fears. Several PWP's have told me it sounds like I need a second opinion from a Movement Disorders specialist. What is the difference between a neurologist and a Movement Disorder specialist, and which is better? I feel frustrated with my doctor. Should I try to talk to him about it or just find another doctor?

1 person likes this

Share this post


Link to post
Share on other sites

A movement disorders neurologist has expert training in Parkinson's disease and the group of brain diseases underlying these types of disorders.

 

Mirapex is not a bad starting point. Watch out for sleepiness, swelling, and impulse control disorders (shopping, gambling, eating, etc.).

 

0.75 once a day is not an appropriate dose. usually three times a day in the 0.5-1.5mg range is typical.

 

Also, you may qualify for clinical trials and you may want to discuss all the potential therapies for both motor and non-motor symptoms.

 

In short getting some expertise is important!

Share this post


Link to post
Share on other sites

A movement disorders neurologist has expert training in Parkinson's disease and the group of brain diseases underlying these types of disorders.

 

Mirapex is not a bad starting point. Watch out for sleepiness, swelling, and impulse control disorders (shopping, gambling, eating, etc.).

 

0.75 once a day is not an appropriate dose. usually three times a day in the 0.5-1.5mg range is typical.

 

Also, you may qualify for clinical trials and you may want to discuss all the potential therapies for both motor and non-motor symptoms.

 

In short getting some expertise is important!

Dr. Okun,

Thank you for your response. I checked my medication and it is Mirapex ER .75 daily. Does that make a difference as far as it being the proper dosage? Also, one of the meds he tried on me was Sinimet, which really improved my handwriting, but now he won't give it to me, saying I am too young (57) and that I will develop jerky movements within five to seven years if I start it now. I am the main source of income for us as my husband retired last year, and my slow, cramped handwriting is affecting my job. I need to improve my handwriting now or I may lose my job. Finally, I told my neurologist that my hope is to improve my handwriting so I can get a better paying job (I am a Licensed Master Social Worker), and he said, "I don't see that happening for you, this is progressive." Do you believe he is right?

1 person likes this

Share this post


Link to post
Share on other sites

If it is extended release it is closer to the right dose.

 

The move is to titrate up the mirapex, but there is no harm in starting sinemet if needed,

 

Many practitioners are too conservative in starting sinemet. The idea is to take the dose you need to restore function. You shouldn't take mega-doses that you don't need.

 

Hope that helps.

Share this post


Link to post
Share on other sites

I am newly diagnosed but have had symptoms for about 10 years. I've seen my neurologist 3 times over 3 months, and now he has me set an appointment for 2 months. He has given me samples of Mirapex .75 to take once a day, but it hasn't helped yet, and I don't have enough samples to last for 2 months. I don't want to wait another 2 months to see him. I still have lots of questions and fears. Several PWP's have told me it sounds like I need a second opinion from a Movement Disorders specialist. What is the difference between a neurologist and a Movement Disorder specialist, and which is better? I feel frustrated with my doctor. Should I try to talk to him about it or just find another doctor?

The minimum information for a sensible reply to your enquiry would include: 1. your age in 2011, 2. when were you entirely well the last time, 3. why and where did you enter into

our (US) health care system. Thank you for attention to this suggestion.

gmk

Share this post


Link to post
Share on other sites

My husband has PD and was diagnosed four years ago at age 56. He too had symptoms for awhile, but was too stubborn to go to the doctor. He is on Sinimet and is doing very well. I like the idea of getting a second opinion from a Movement Disorder doctor. Is there a website we can go to to locate a doctor? We live in Palm Beach County, Florida. While we both like the neurologist he is seeing, he is starting to develop more motor problems. Walking, jerking movements and is falling on occasion.

Share this post


Link to post
Share on other sites

There is no specific website that really tracks this information.

 

Carlos Singer at UM has a NPF designated Center of Excellence.

Share this post


Link to post
Share on other sites

The minimum information for a sensible reply to your enquiry would include: 1. your age in 2011, 2. when were you entirely well the last time, 3. why and where did you enter into

our (US) health care system. Thank you for attention to this suggestion.

gmk

 

I will be 58 this month. I was symptom free before 2000 but nobody connected the dots until 11/2010. I have always been in the US healthcare system.

Share this post


Link to post
Share on other sites

[quote name

Ok. Now, make for your husband an appointment with a board certified family physician in the county where you have had your residence, i.e., Palm Beach and make the visit with him. Let the family physician examine your husband and, assuming that he agrees with the diagnosis of your neurologist, ask him to refer your husband for reassement and second opinion according to the suggestion of Dr. Okun. Of course, the second opinion should be written to your family physician representing your best interests in the US health system. Good luck.

gmk

Edited by gmk

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now