Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group update on Niece

My niece ( the one who is now 16 and has AS she is also the one that was having problems with her feet) was up for a nice visit on Sunday of course we were chatting about this and that and I asked how she was doing with her arthritis and when she sees her doctor again.
She said that she doesn't know when she has to see him and she doesn't want to go back to him because he doesn't do anything for her. She said that he asks her some questions then gives her a slip for xrays and blood work and then on the next visit doesn't mention either one and gives her a slip for more.
She said that her knees are killing her and she has trouble going up and down stairs and why bother going to the doctor when they don't do anything.
So this morning I was talking to her Mother and asked how my nice was feeling of course she said fine there was nothing bothering her. I told her that this was wrong and explained why I then told her to make an appointment with her doctor and get a referral for a rheumy.
Gee I could cry when i think of what she is going through and what she still has to face .

Valerie,
I know your heart is heavy for this young girl. She will need your love and understanding the rest of her life. Are you saying that her mom is denying that she has pain?
It sounds like she needs another doctor. Has she tried the NSD? My knees hurt so bad that I would cry while walking in the fields as a junior high student. No one, I meanno one could beleive that I was in that much pain.
Her mom needs to know more about this.
Because of pain I started to do some bad things just to break the monotomy of the constant throbbing!!
Tell her we understand and we are there for her.
Br'er Lon

Hi Valerie,
Im sorry to say to many people seem to be treated like this I hope she gets to see a Rheumy and get some proper help.

Kevin

Hi Lon
No her Mom doesn't deny that she has pain it seems that the doctors don't believe that she can have pain because she is only young. She always tells me things that she doesn't tell her Mom and I will let her know if is something important .
Thanks for being there Lon for both of us. That is one of the reasons that I love this place. We take care of each other. I will let you know what happens with her.

Thanks Kevin
I just have to get her mom to put her foot down with the doctor and get the referal to the rheumy. She doesn't take after me when it comes to doctors .

Hi wallwe, I agree with the others and yes put your foot down and do your best to get her an app.
I feel for your situation.
Best of luck hey and let us know how she gets on, if you dont mind.

Hello Valerie

It' so nice to meet you.

I wonder why it is that if you have a broken bone with a cast on everyone falls over themselves to help you and sympathise but with a condition that you can't see - people don't always give you the "benefit of the doubt" so to speak. I've never broken a bone - but I'll bet it's not much of a competitor with AS when it gets going.

I find it so disappointing and upsetting when doctors don't give the help and advice that we rely on them to give us.
I hope you, as a family, can get seen by someone who will get stuck into helping your niece. It's the least you deserve.

Very best of luck to you and your family with this.

Good grief, don't tell me we have another case of It's All In Your Head syndrome. Your niece needs you to go to her appointments with her, along with her Mum. You are the one who understands what's going on, her Mum can insist on the referral. Honestly, do they think she's making it up to get attention??! Makes me so mad.

OK, I wish I could fly out there and go with you all to her next appointment. That doctor wouldn't know what hit him.

I'm sorry for your niece's pain. Let her know she has a whole whack of people who sympathize here at KA, OK?

Warm hugs (and one for her and her mom),

Hi there
I will keep you posted. I wasn't talking to her mom today ( I work days and she works nights ) to find out what is going on.

Hi tinkerbell
I hope that she can see someone who will take her seriously. She is a really great kid and has been though so much with her toes that I really hate to see her going through this as well.
I agree with you .. have a cut you are treated like it is the end of the world..