open letter from someone about leg pain

[mantel]

Hello everyone , this letter was shared on FB by one of my friends in Australia. The lady who wrote it (also in Australia) is a friend of hers. Does any of what this girl is going through ring any bells with any of you and if so have you any suggestions that I can pass on ? This is a youtube link showing the young lady concerned . As the letter says, no doctors have been able to help but as we all know doctors can be hit and miss and maybe you or someone you know may have suffered similar and had a better outcome with a more informed medical practitioner. Many thanks

THE LETTER and YOUTUBE link below

This is my granddaughter, stephanie. I can't imagine being in that much pain all the time. ALL THE TIME. And having no diagnosis, and doctors who have no idea how to help her must make it even more awful.

A lot of the time, if most of us feel pain, for whatever reason, we know it will end. We know what the reason for it is, and can take something to make it hurt less, and we manage, because we know it will go away.

Stephanie doesn't have any of that. She doesn't know what causes it, she knows it won't end, and she can't take anything to make it feel better. She just deals.

She's sixteen.

She uses a wheely walker.

She doesn't know if it will ever get better.

The doctors don't have any idea either.

At this point in time there is no medical knowledge or technology that can help her.

It's winter. She's wearing shorts because she can't bear anything else touching her skin. Think about that. Sitting down, or laying down, means there is something touching a whole big part of her legs.

I'm not expecting any of you to have any idea what it is, because the experts who have done countless blood tests, and MRIs, and CT scans don't.

What they do know is that it is real. And that stephanie isn't the only person they've seen who has these same symptoms. They just don't know what it is, or what causes it, or why they get it. And they can do nothing about it

youtube.com/watch?v=8g4hh3r...(Not working as expected?)

[Madlegs1]

At that age it sounds like some auto immune problem. Lyme disease comes to mind or Lupus - very distressing for one so young.

[Joolsg]

Hi Mantel,

I did read an article a few months ago about a doctor who had a similar condition. She felt as though her legs were on fire constantly and she couldn't tolerate heat of any kind so needed to stay in air conditioned rooms. I can't remember where I read the article but I do remember it was a fault with the messages being sent to her hypothalamus and sadly, there was no way to cure it or stop the pain.

It was a fault in the sodium channels as I recall. I don't even know what that means but something to do with how the nerves transport messages to the brain. This isn't helpful I know but I suspect this poor girl has a similar fault.

[mantel in reply to Joolsg]

Thank your replying joolsg . How awful to think that unless a new treatment is discovered you will be in constant pain for the rest of your life.

[Hidden]

Hey,

Wow! Poor thing! I got tears in my eyes when I read this -- and I haven't even gotten to the link yet! It won't work for me, but I am interested. Is there another way I can get to it?

[mantel in reply to Hidden]

I will try again. youtube.com/watch?v=8g4hh3r...(Not working as expected?) see if copy and pasting this into your search bar works . It has just worked for me.

[mantel in reply to mantel]

No I can see the same thing is happening again ,wierd. Right this should work . Go on to youtube and type in this in the search bar - what stephanie's pain looks like - It is the top video on the list, you can see a pair of legs. The name under the title is Jade leth who I think is her mum.

[Hidden in reply to mantel]

Ok, got it. Wow! Poor thing! I agree with looking into what both Joolsg and Phogan advise if they haven't already.

You know, people here are so awesome. If we could somehow get more iinfo. about her (what medicine she takes, what kind of pain she has (throbbing, pins and needles), etc.) we might be able to put our heads together and come up with something.

[Hidden]

I have suffered from chronic RLS pain for approximately 12 years, after the symptoms of RLS turned to pain. I find that the Parkinson's drug Madopar stops the pain 100%. My advice would be to run it by a specialist in the field