Dopamine-Responsive Dystonia

This is my new diagnoses. Since I never go see the Parkinson’s specialists a new diagnoses is not surprising after seventeen years. I don’t have Parkinson’s diseases, but my symptoms mirror the condition. The doctor who diagnosed me said I didn’t need to keep coming back after several years of seeing him, as long as my progress stayed the same. Changing states and having many different jobs and health insurances I had to make sure my medication was always filled. I have a copy of my medical records and always have it for my primary care physician. Since they have no expertise in the subject they always read the records and fill my prescription.

I researched this new diagnoses it and it is genetic. This explains how my mother has the same condition. It also starts in childhood which is exactly what happened to me.

I asked the doctor a lot of questions.  He was patient and answered all of them. My children have a fifty percent chance of getting this condition. It is easy stabilized by medication. So I don’t feel that bad about my desire to have children.  Muscular dystrophy was a disease that pledged my father’s family.  I had two uncles and two male cousins that died of the disease.  I never knew my uncles and I was considerable younger than my cousin. I do remember having a relationship with my cousins. It is hard choice to have a child that is not perfect. A choice I will have to make. There is a possibility that a child of mine will have problems. I will cross that bridge when I get there. It will not be an easy choice.

My reason for the doctor’s appointment was about my medication. I had questions and needed answers.

Q)  Will this medication have long term effects?  25/100 Carbidopa/Levodopa

A)   It should have no long term affects. Usually people with Parkinson’s disease have involuntary movement with high dosages of Carbidopa/Levodopa over time. It is believed this has to do with the disease. I have not seen my symptoms return as long as I take the medication. I have forgotten to take it by mid day I feel the symptoms start coming back.

Q)  Will this drug give my child birth defects?

A)   There have been no studies to confirm there is defiantly a level of risk. In his opinion the low dosage he believes there would not be a problem but he is going to do further research and consult another neurologist and get back to me in a week.

Not the answer I wanted to hear. It is actually the same answer I have gotten for years. Enter at your own risk. I did appreciate him taking the extra effort and doing research. I have found a few cases online of women who had healthy babies with Parkinson’s diseases taking higher dosages of the medication. I have a feeling I am never going to get a firm yes or no.

I am looking forward to more information. The truth of the matter is there is not a whole lot of information and everything is a shot in the dark. I am going to do what I have done over the past 17 years. Stay positive.

Here are links to what I found in my research

Dopa Responsive Dystonia Central

Parents and Cargivers

 

 

 

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2 thoughts on “Dopamine-Responsive Dystonia

  1. I am seriously interested and in need of more info about your journey with ur condition, meds, and pregnancy. Please email me so we can share experiences. Please

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