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Posted 8/17/2011 12:10 AM (GMT 0)

   As Im sure some of you may recall, my 6 yr old( Carly, who I get my screenname from) was being tested for Myotonic Muscular Dystrophy. When i received my Fibro diagnosis i was at least grateful to have a name to what was causing my own issues.

  Yesterday, I had my neurologist appointment. Turns out, i too have MMD. I am in shock right now.and scared to be honest.All I want out of this life, as Im sure any parent does, is to be around to watch my children grow up. I still pray that this will be possible. If you pray, will you pray for me , too? I pray that each and every one of you have pain free days ahead.

 I would like to still"visit" with you all as you have given me a lot og help and advice. my step mother has fibromyalgia and I have shared some of your words of wisdom with her.

  Thank-You and continue to be the best you you can be:)

 <3 Tracey

Posted 8/17/2011 2:05 AM (GMT 0)
Tracey, I am so sorry to hear that you and your daughter share the diagnosis of MMD. I didn't know anything about this disease so I did some reading. I will certainally keep you both in my prayers.

I know you must be feeling all sorts of emotions right now, but hold on to hope and let your faith carry you. Remember our motto...one day at a time.

Please continue to post...we care!

Hugs, Robin
Posted 8/17/2011 4:43 AM (GMT 0)
I am so sorry to hear what you are going through. I do have a faith and you and your family will be in my prayers. We will be here for you.
Posted 8/17/2011 11:32 AM (GMT 0)
So sorry to hear that Tracey, my thoughts are with you and your daughter

Fiona
Posted 8/17/2011 1:26 PM (GMT 0)
Will keep you in my prayers.

Wish I could do more for you.
Posted 8/17/2011 1:35 PM (GMT 0)
Tracey, I'm so sorry you are having to go through this. I hope will try to stay active in the forum. Do you do any kind of blog/journal? I started writing one about my issues and I think it is helping me. Got to have some place to let it out. Hugs!
Posted 8/17/2011 9:52 PM (GMT 0)
Hi Tracey,

I wanted to reach out to say hi to you. I saw your post about you and Carly. I too have myotonic dystrophy and was diagnosed around my daughter Kayla's birth. I have a blog that I've kept for Kayla since her very traumatic birth. http://www.cureforkayla.com Also, I now manage the Myotonic Dystrophy Foundation. I would be happy to send you one of our family empowerment packets for newly diagnosed patients. You can sign up on our website: http://www.myotonic.org and then click on the "Join the MDF" button on the left. I think you will find it to be very helpful.

I'm so sorry about your diagnosis but please know that you aren't alone. If you feel like writing to me, you can reach me at [email protected].

Warm regards,

Lisa
Mom to Kayla, Age 6, Congenital Myotonic Dystrophy
Posted 8/18/2011 6:19 PM (GMT 0)

Tracey, I'm so sorry to hear this but now you can be treated appropriately.  I did go to a site about MMD and it looks like there's always the possibility of your having a mild case so that's what I'll be praying for. 

 http://www.mda.org/publications/fa-mmd-qa.html

This sounded encouraging to me.

MMD varies greatly in severity, even within the same family. Not everyone has all the symptoms and not everyone has them to the same degree. For some people, symptoms are fairly mild even in middle age, while for others, the weakness and wasting are severely limiting to daily activities. For still others, the effects are somewhere in between.

The site also showed this man.

VIEW IMAGE
VIEW IMAGE

On the cover: Andy Vladimir, of Coconut Grove, Fla., had MMD and used a wheelchair, but that barely slowed him down. A successful businessman, textbook author, world traveler and travel writer, including for MDA's Quest magazine, Andy lived to age 76

So there is longevity to this, also.  We'll just take one day at a time and keep the prayers and positive thoughts coming.  AND live life to the fullest.  None of us know when we will be "called home".  I don't have this illness but I could pass on tonight.  So try not to think that way.  I do believe you will see your children AND grandchildren grow up!

Of course, keep coming here!  We missed you and we will be here to help you any way we can.  I hope you have a great day today.

Sherrine

Posted 8/19/2011 1:44 AM (GMT 0)
I do not pray but I can certainly think of you. That is no fun diagnosis to have. But with every passing year doctors become more informed and more advances are made and all I can do is hope that those things cause positive effects for you and your daughter.
Posted 8/19/2011 2:36 AM (GMT 0)
Hello Tracey,

I read the links and this sounds so scary for you and your daughter. Prayers and positive thoughts for you both, stay strong.
Posted 8/23/2011 11:14 PM (GMT 0)
    Thank you all you so much for the prayers and kind words. They mean so much to me.

I think I am going to start a blog, and will elt you know as soon as I set it up/

Kaylas mom...I hab=ve went to myotonic.org. when they thought this ws what my daughter had. I ironically received the packet of info the day of my diagnosis. a lot of helpful information. ive had to scour the internet. the neurologist only said" This is what you have, no cure, no treatments, we only treat symptoms>' and left the room. never said if and when i should return to him or not. like I said i am more heartbroken for my daughter than for myself.

Again, thanks to everyone. I will keep coming here. My PC has been broken, so I can only go online nightly with a borrowed laptop.

Take care everyone!

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