Hi Everyone- My 6 year old daughter is currently 7 days into a trial of sinemet. She has very mild symptoms of leg pains, dragging her left leg, terrible balance, clumsiness, cannot keep up with those her age etc.
The MRI and DYT1 tests came back negative.
She does appear better this week but I'm very hesitant to say yet as it is not all better and she has had better weeks before and then gotten worse. She has still had some pains but her walking, running, balance and posture do appear better. But her physical therapists (who she has seen for a month) said there is significant improvement this week. So I'm quietly hopeful I guess. .
I guess the more I see of this the more I realize how little the doctors know. We are at the best neurological hospital in the country, the hospital that discovered many of the gene links, but they still don’t have all answers.
So I'm hoping some of you can help answer some questions. If you or someone in your family has been responsive to l-dopa, were there other people who had dystonia or signs of it?
My husband has been battling jaw problems for at least 10 years. They diagnosed him with TMJ long ago but they never helped him at all. He had teeth pulled, shaved, all kinds of mouth guards…countless different things. Nothing ever helped. He was having a filling done in December and the dentist said his jaw muscles were spasming so badly they stopped because they were worried about them.
When I mentioned this to the pediatric neurologist, he didn’t seem to think they are linked, but I just have this feeling they may be. I mean, I would explain so much. I know there are completely different forms of dystonia, DRD and oromandibular, but I it just makes sense to me anyways.
Has anyone else had something like this? Does this seem too different to be linked?
Thank you!
