I just wanted to say hi to all who are here and introduce myself..
My name is Aggie and I'm 33-I have three children and a great husband who is more than likely the most understanding guy ever..He has always been on my side even when a lot of people did not believe me..
I was DX'ed with Fibro/Myofacial Pain in 2000. It started to get a bit better and then at the end of the year I was hit from behind while driving and that pretty much started everything horrible.
Just recently I started to have symptoms of Lupus and went to get that checked out. Well just this past Thursday I was DX'ed with Connective Tissue Disease and after all the labs come back she will know more. I had over 10 viles of blood taken at this visit so I think they are checking everything under the sun!
I have had just about all of the symptoms except for the sun bothering me. So far I have been O.K. with that one but, ya never know what could happen.

I'll be around, more than likely just reading all the posts and learning all that I can~

Aggie

Hi Aggie and a big welcome to you

if you go further down the index there's a fibro group that will probably be chock full of good info and support.

Also, while you've had all that blood taken....here are two sites that may be useful: www.neuroexam.com and www.lizajane.org

The first outlines all the things neuros do when checking you out for a diagnosis and it includes a lot of Why they do what they do in terms of what they are looking for.

The second site is by a member who developed all these charts as she was sorting thru the medical/neuro maze for a neuropathy AND spinal diagnosis. It's a way that you can keep track of all your blood, mri, nerve conduction and any other tests all in one place - don't let the size or scope of all the worksheets intimidate you. It's a way to keep a handy summary of all that you have gone thru in getting any diagnosis.

In the meantime, I hope you have a few pain-free moments! - j

Hi Aggie and Welcome to NeuroTalk

Hi, Aggie, and welcome to NT. I'm sorry you're having so many problems, but this is the place to come for a comforting (virtual) shoulder to cry on, a listening ear to vent to, and the occasional advice of ones that have already experienced what you are going through.
Hugs,

Hi All-

I just received a call from the Rhumey and she said my labs are fine so I guess back to square one....She did keep me on the Planqueil because of the swollen and painful fingers, wrists, ankles and feet-and the other problems and symtoms I have.

I am happy that I am O.K. but, sometime it just doesn't make sense to me. Where do all these symptoms come from? Why do I have them if everything is O.K.? Does that make any sense...I'm just babbling now I know-

I'm confused-can Fibro cause all this?


Aggie

Aggie, one thing I don't understand is how you could be diagnosed with Connective Tissue Disease, then be undiagnosed when all of the blood work came back normal? Was it a case of: "I think you might have Connective Tissue Disease, let's do the blood work and see?" Could you possibly be in the early stages of CTD and the antibodies, or whatever, just aren't showing up yet? I don't know much about CTD, just googled it, but it seems to be a broad range of symptoms which could turn out to be one or several different diseases like Lupus, RA, etc. So maybe you have all the symptoms, but the doctor just can't put her finger on which it is. Although frankly, if it's none of them I think you'll be much better off, the page I looked at was a witch's brew of diseases and symptoms no one would want to be stuck with.
Do you go back to see her? Maybe you could ask her to explain a little better just what she thinks you have. Or if you don't have another apt scheduled, call and talk to her nurse. Often the nurses can explain better the results than the doctors can!
Keep us updated!! Sound like you are embarked on your own particular saga of diagnosis.
Hugs,

~~~~~~~~Welcome Aggie~~~~~~~~



Noong

Hi Lois,

Ya know I was so surprised by the call last night from the doctors office that I couldn't think of one question to ask them..The doctor told me that she wanted me to come back for a follow up in two weeks. When I got to the counter they said there computers were not working and to call for an appointment-so I did the next day. They told me that she said 8 weeks for a return visit and she would be out for the next week and to not expect a call from them until next Tuesday. O.K.

So last night right in the middle of dinner they call and say your labs are fine but, don't stop taking your Planqueil and Motrin. She will see you in 8 weeks-

Like I said I was duh, O.K...

So now that I've had the chance to think about it I just e-mailed them a bunch of questions. They usually get back to us pretty quick-

I have a lot of symptoms and just want some answers.

When they get back to me and let me know I'll come back. For now it's the waiting game again..

Aggie

Hi Aggie
sure hope you get those answers........I really feel for you in this as
we had over a year of misdiagnosis (and therefore incorrect treatment) till we finally got the definitive Crohn's dx for my son this summer

Now that we know what we are dealing with, we began the dietary modifications and correct supplements etc and he is doing so much better!

so hoping for a clear dx for you too so that you can start on the path to healing.....do keep us posted