I have been dancing since I was 3. Weird this were happening the past two years and no matter how hard I worked I couldn;t get back the strangth I once had come to find out I have Myotonic Muscular Dystrophy! I feel like my life is over, I am a dancer and dance teacher throught and through. Dance is my love, my life, my lively hood and my expression, what should I do? Please help!

First off, I'm so sorry that you've received this disappointing diagnosis. It's never easy to hear that you have a medical problem, but it's even worse when you are dependent on your body for a livelihood or outlet.

Secondly, as someone who was diagnosed at a very early age with CMT (a genetic and degenerative neuropathy disorder), I am here to say that your life isn't over and that there are people out that who are more than happy to help you understand and assist you with your ongoing needs! Although we don't suffer from similar diagnoses, there are quite a few similarities.

I see from your profile that you live in Northern California (SF girl here), fantastic: I can now attest to a wonderful organization in SF that I would suggest you get in contact with. They have assisted my Mom (CMT) mainly, but my sister and I have also seen them. It's called the MDA (www.mdausa.org . . .), they not only conduct research but they also assist many patients with regular (disease specific) appointments, orthotics, physical therapy sessions, and clinical trials at little to no cost to the patient. The clinic office is located at California Pacific Medical Center off of Sacramento St. in SF. All of the medical staff are wonderful to deal with and are incredibly helpful with all the questions and concerns you might have!

I have found that exercising and constantly using your muscles is a good idea as it seems to slow down the progression of my disease (and from a short online research, yours as well), so dancing will definitely help! My advice is to take each day as it comes; there are going to be some days where you feel 100% and can do everything you want, but then there are going to be days where you are tired and a little weak. Don't be hard on yourself, try and relax, this isn't your fault! You will learn what your body can and can't take and how to get around the problems.

Good luck and if you need someone to talk to, you can always PM me!

My profile needs updated I live in TX now. I am in contact with my local MDA and I have my first appotntment at teh MDA clinic out here in November really looking forward to gettin gon a PT regiment. My right leg works fine, looks like a strong dancerleg but my left leg is really struggling and looks like a chicken leg. I'm just afraid in placed like my left leg where the muscle is clearly deterirated...can I get it back?? I've sure been working it with no results, it seems to get skinnier and skinnier in a bad way...

I'm glad that you have already been in touch with your local MDA office, they will definitely be able to answer all of your questions and help out!

Obviously every patient has a different experience with the disease, but it appears that myotonic dystrophy can sometimes only affect one particular muscle in the body...so perhaps your left leg will be the only body part effected (at least for some period of time).

You shouldn't be seeing a drastic decrease in muscle mass or functionality, as it's a progressive disease...so the body will slowly change, if you are seeing quick changes it might be something else and should definitely talk with your doctors about it!

I've seen changes and strength with physical therapy, so hopefully you will see that change over time as well.

I'm sure you have seen it, but if not check the Myotonic Dystrophy Foundation's website out as it has a ton of information specific to your disease. (www.myotonic.org)

I have no tips to share, just want to give you a cyberhug :::hug::: and wish you lots of courage and inner strength to deal with this.