clicking joints

[lisaob1]

hi my daughter has a syringomelia and also a rare muscle disease,but my question is? can syringomyelia cause joints to click on movement? this seems to be getting worse for my daughter but im assuming its her muscles being the cause but then i dont know if its her syrinx.does anybody else have these symptoms?

[selmaS]

  Sometimes it is hard to tell those close to us just how  hard it is to move forward on our journey.....as a mom my self, I can only imagine what u r going thru as I can only pray my DD never gets the dx I have, or my future grandchildren.

And family can understand only part of what we go thru....only others in the same situation can really understand how we feel.

I am glad I was of some help to u, and please feel free to PM me if u want to "talk" more
: )
"selma"

[lisaob1]

its faith what keeps me going..that is something i will never give up on. it gets hard sometimes and iv gone through all the emotions,its been almost 19 years since my eldest daughter was born,she too had the same syndrome but i lost her when she was 4,she had heart complications related to the same syndrome. my daughter now is 16 and seeing her hurt just breaks my heart,i can handle anything life throws at me,but its my daughter who is the one going through these horrible diseases and she makes me so proud because she is such a fighter. but when she gets poorly i guess i get frightened because i cant go through it again...i just cant ye know. i love the poem dont you quit. i never will quit but doesnt mean to say its an easy journey thankyou for your support i genuinely mean it.you have truely made a worried mum thats feeling alone right now feel someone out there is listening.although my family and friends are fantastic its hard to talk sometimes as i know they hurt too x

[selmaS]

  Lisa, have faith that u will find a dr that will have answers for u...most of us r told that with the chiari dx...no cure, and there r many drs that do not believe that our symptoms r from the chiari so do not believe that we will benefit from surgery....but, there r drs out there that can help...even tho many of us go yrs searching...and it seems hopeless....it's not.

That is y I have the poem by Dr Oro at the top of the forum, to show there r drs that understand what we go thru.

Keep the faith : )

  "selma"

[lisaob1]

hi selma i was afraid of that answer,but also i was afraid of it being linked to her syrinx,i guess it was a no win situation, her syrinx is T6-T11,9mm and that was almost 3 years ago,her muscle disease is so rare they have never come across it...ever.the type she has anyway. just feeling a bit scared and in the dark. i know this site is for people to vent and ask for help,i guess sometimes i wish someone would just tell me everything is going to be alright,im so scared.my daughter is gradually having more problems and what makes things worse is iv been told both are untreatable and both incurable. what do i do with that?

[selmaS]

  Hi Lisa....I know those with chiari can have the clicking in the neck joint....but if it is all over, I would consider it to be from her muscle condition or something else going on.

DO u know if she also has Ehlers-Danlos?This would affect joints.

  "selma"