New members

[beth]

Welcome to the new members. I've been hoping you would post. I'm not a face book person myself so maybe you are all there. Anyway, welcome.
I haven't posted a history as I still have no idea if I really have Melo and am totally confused but find comfort coming here and hope you will also.

[ryangallant11]

Hello
I am a new member and patient to Melorheostosis. I am still in the area of confusion and frustration as i continue to learn as much as i am capable of. Unfortunatley i do not have a great supoport system. Family Doctor wise that is. Does anyone have any adivice on how to seek help from the proper professionals??

[beth]

Hello, Hello , Hello,
Welcome, ryangallant11.

sincere apologies for the delay in responding to your post.
It is a nightmare when you are first diagnosed. I still haven't meet anyone who has even heard of it accept the person who read the X-ray and the MRI person and off course I haven't meet them either!

Are you living in the USA? I'm in Australia!

Not sure there are many out there who know anything and this is a good place to be.
Now I know you are here I will look more often at the site.
David is very supportive and has a very positive outlook and I'm so grateful to him for this site

Hope to hear from you soon.

[ryangallant11]

Hello Beth

You dont know know how excited I am, that I actually got a reply. Wasn't sure what to expect. I appologize as well for taking long to reply I was on vacation the begining of this month.

No I am not in the USA or Australia, i'm In Canada! Unfortunatley it doesn't sound like there is much help over here for me. I'm being sent to a third Orthopedic surgeon soon, on a waiting list. My doctor doesnt want to me to do anything but sit and wait, which is really frustrating! How did you deal with your diagnosis?

So glad to talk to you!!
Hope you hear from you soon, and i as well will check this weekly from now on

[beth]

It was difficult and scary when I was first told and like many others here the frustration of no clear diagnosis adds to the anxiety. I'm lucky the pain is not too bad at present and the lump under the foot is managed by orthotics. But there have been times when it is accute and difficult and just plan frightening. Nowdays I live and try not to focus on it and just enjoy so if things go pear shaped later I can look back and say I gave it my best. But that is not easy all the time.

the physiotherapist I'm seeing at present is at least prepared to agree it is melo. Not that I want it to be but at least it makes sense.

Its freezing here in the morning and feels like the wind is coming from the snow fields.
Hope you are enjoying the last of your summer as I am looking forward to spring.

I will look forward to chatting again soon.

David, if you are around hope things are going OK for you. Love to hear an update.

[ryangallant11]

I still dont have 100% say yet. I got make an appointment for a full body MRI next week. Im nervous i have it not just in my legs but arms as well. Been in light duty at work for atleast 3 weeks now. And soon im sure ill be on 8 hour days since 12hour days are just to painful.

What do you consider cold haha. Cold for us is -30 degrees celcius hahahAhahahahH.

[beth]

that must very difficult for you. For me it is just one foot....
they only xray the one foot and MRI the one foot so I'm assuming its only there.
there are no symptoms to suggest otherwise.

Who works 12 hour days?? Is that the norm in Canada or just your particular job?

Working parttime is my lot these days and has been for sometime.

[ryangallant11]

Hello Again!!

No 12hour days isnt technically common i guess. im in the west part of Canada. I work in the oil fields. So it never shuts down. there is always people there to keep it up and running. So it is extrememly comming in this area of canada in particular. ive been working 12 hour days from 8am - 8pm for 3 years now. not fun! haha.

Next week i go bug my doctor again. He isnt overally helpful unfortunatley. But im keeping my fingers crossed. im just thankful i have a great guy to take care of me and both my family and his are very supportive. I couldnt do it without them.

Nice hearing from you as always