Pregnancy and dystonia.

[lynnbibb]

Hi,

I am new to the Dystonia group and ask questions on behalf of my 31 year old Daughter.

She has suffered from shoulder problems since her teens and several years ago had a neck spasm that her at the time doctor thought may be dystonia. She has managed this with yoga, relaxation and Diazapam when the spasm is bad, but has not been sent to a neurologist, or had an official diagnosis.

She is now 6 months pregnant, and out of the blue had a spasm in her neck for over 2 weeks. She has seen her own doctor who is baffled, a chiropracter who hasn't been able to help, an osteopath tonight, who says he's never seen anything so extreme and can't understand why where the tension is, it shouldn't make her neck pull to the left. Her Gynacologist has asked her doctor to sign her off for a week and prescribed one week of Diazapam as it shouldn't hurt the baby, but nothing is helping.

She is going back to the doctors in the morning, but I wondered if any of this is familiar/rings bells with anyone with Dystonia. We are clutching a bit at straws, but eager to find out what is happening and how we can help the problem.

Thankyou in advance, Lynn x

[yoganidra]

Hello there read your post, in my opinion your daughter needs to see a neurologist asap, once she gets a diagnosis, it definitely sounds like dystonia, you could ring the dystonia society for some support, also I have a friend who went down with dystonia when she was pregnant, I'm happy to talk privately about her recovery, if you want to? Best of luck

[christopher_cms]

lynn ... schedule an appointment for her with a movement disorders specialist .. they can diagnose this for her

[AllHis]

I know who may be able to help. I've been talking with a wonderful neurologist who has seen her Parkinson's patients younger and younger. She has currently left her practice because she herself has Parkinson's. Her book is called Parkinson's Diva. The doctor's name is Dr. Maria De Leon. She runs a free counseling organization in East Texas and can be found on line at defeatparkinsons.com

[lynnbibb]

Thankyou for the replies. Sarah is a bit easier and hoping to return to work tomorrow.

AllHis. Thankyou for the link. Could you tell me what the link to Dystonia and Parkinson's is please. I've not linked the 2 but do have a father with Parkinsons?

[AllHis in reply to lynnbibb]

I have dopa-responsive dystonia AND I AM STILL LEARNING. Not all Parkinson's patients have dystonia and not all dystonia patients have Parkinson's. There is a "sub group" with dystonia (who respond to dopamine) that have both. Also this book I was reading, dystonia can be a first symptom of parkinsonism or parkinson's. I think most of these people carry a gene and it's hereditary. This is friend to friend. I'm not a doctor, but wanted to share that Parkinson's Diva was a really helpful book for me.