Hi all~~ **I'm new here**
 

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 :)

Aggie, if you've not found it yet..
 

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! :D
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

O.K.-she called me herself~
 

I was surprised that she herself called-A lot of doctors son't do that-

O.K.it's undifferentiated-which means I have symtoms but my labs don't show anything. We will watch it from here on out and if I get any symptoms to let them know. Other than that she will see me in 8 weeks.

Also to take the Planqueil and that's it~

I was also surprised to hear that even though I have chronic UTI's, they have nothing to do with any of this. I was surprised seeing that it is a infection from bacteria. But she said no, it had nothing to do with it.

See that you never do know~

Aggie

Wow, sounds like you have a winner in your doctor! Keep ahold of her, Aggie! Meanwhile, you could start googling Connective Tissue Disease, so you will know what symptoms to watch out for.
Hugs,

Aggie,

I have Undifferentiated connective tissue disease. It was diagnosed in 2003 because I have loads of autoimmune symptoms, but my test results are inconclusive.

One thing I would suggest is making sure you get a copy of your lab results. My doctors would use the terms "normal" and then I would look at the lab results and see that some of the tests were borderline or slightly outside of normal -- and one rheumatologist would call it "normal" and another one would call it "inconclusive".

In my case, what happened was that my primary care doctor looked at all the lab results I had copies of, and even though several tests were on the high or low end of normal, and other tests were slightly outside of the normal range -- it was looking at all of the results together as a pattern instead of looking at each test indivudually that caused the doctors to see that there was a problem.

Even though my lab results were "normal" when someone looked at each test individually, they were abnormal when they looked at all the test results together and saw the whole picture.

So, I learned to always get a copy of any/all lab tests and I learned to make sure that one of my doctors looked at the lab results as a whole picture.

I hope that the Plaquanil helps -- and make sure you listen to the doctor and get your eye exams done on a regular basis while taking the Plaquanil. Even though it's a very very rare side effect, it's important to be on the safe side :)

Take care,
Liz

**Thank you Liz**
 

Hi Liz,

Thanks for your post, it's very helpful!
I've been asking for a copy of the labs that were done on the 9th of this month but, for some reason I can not get an answer..:confused:

I just called and e-mailed and asked them to please get in touch with me so that I can have a copy for myself. I would like to see them..

When you get labs done on my insurance, you can see some of the results on the internet if you have a password and username but, all the labs I had done are not part of the online lab results so I have to request a copy.

Hopefully this time I get an answer. Do you usually have to pay something for them? I've never done this before..

Thanks again for your post!:)

Aggie

Your welcome Aggie :)

I never had to pay for copies of my lab results...

...but some doctors offices make you fill out an official request form, and charge a 50 cent fee per page for any/all copies of a medical record.

My specialists (rheumatologist and neurologist) don't like giving me copies of my lab results - but anytime I have labwork done I tell the lab to send a copy of the results to my primary care doctor, and my primary care doctor automatically makes a copy of every lab test for me.

I also used to work at the lab -- I was a phlebotomist (taking blood) -- and I have called the lab director before and asked her if I can swing by to pick up copies of my labwork... I only do that when I am really impatient and I don't want to wait until my next doctors visit to get my results. :)


Have you seen your doctor since the labwork was done? Many doctors want to talk to their patients in person about the results before giving the patient a copy - even if the labs are normal many doctors do this as a rule. So your doctor may be waiting to see you in person before he/she releases the copies to you.

Another reason you might be having trouble is because many doctors offices are very strict about having a patient sign an official release form before they release any copies of the persons medical record. If this is the case, you will have to go to the office to sign the form, or have them mail the form to you and then mail it back (and they might charge a "copying fee" per page).

If your doctors office has an office manager, you can call and talk to that person to find out what needs to be done in order to get a copy of the labwork for yourself. If there is no office manager, then speaking to the doctors nurse could be helpful. Of course, speaking directly to the doctor is best, but they don't always return phone calls to patients unless it is an emergency.

I hope that helps :)

take care,
Liz

Hi Liz,

The office e-mailed me and let me know they will be putting them in the mail for me. So, I should have a copy within a day or two..

The doc's office called one night last week to let me know the results of my labs and totally took me off guard. When I was leaing the office, the day I got the blood work, they told me she would be out for a week and that I would not get my results until then. So when they called me at 6 at night a few days later all I could say was thanks! I froze like a deer in headlights!!

The next day I wrote a bunch of questions to the doctor and she called that day to chat with me about the results. That's when she told about them being undifferentiated-for now.

Thanks again for all your help~

Aggie

Hi Aggie!

Welcome to the club! I'm sorry you have the confusion on top of the pain and other symptoms. The ambiguity and unpredictability of autoimmunity takes some getting used to. But the short answer to your question is that fibromyalgia can co-exist with lots of other symptom-causing processes in our bodies. Not all can be specifically tested for a diagnosis, and a negative test on some of the others doesn't mean the illness is definitely ruled out. Some folks get a positive hit at sometimes and at other times the same test will be negative.

I also have been tested for everything under the sun. Since I have seen several doctors over the years, I have collected a whole pack of DX's: Hashimoto's thyroiditis, chronic EBV infection, primary Sjogrens, chronic fatigue/fibromyalgia with sicca and Raynaud's, etc. Some docs will insist that once a fibro Dx is in play, any and all symptoms must be attributed to that one diagnosis. There are also some Docs who will not Dx an illness without positive lab tests to back it up. Then there are some Docs who will make a Dx on the basis of history and exam even when not supported 100% by lab results.

At this point, my fibro is under control. I take some anti-depressant meds to regulate my sleep cycle. I exercise as much as I tolerate, and I have found accupuncture helpful for the tenderpoints and trigger points. Basically, as long as I sleep well, I have very little pain. Learning to manage your symptoms will take some time, but it can be done.

However, you need to be firm about your experience of symptoms. Most docs are test-dependent. That makes them reluctant to give a Dx or prescribe certain treatments without positive labs, even though they will admit that sero-negative forms of many autoimmune illnesses exist. Once you find out what works for you, insist on it. For example, I have learned from experience that I need plaquinil. Every time I get better my docs try to reduce or discontinue the plaquinil, and every time I get worse. Then they put me back on the plaquinil, and I get better again. So this is important advice: keep a symptom log up to date, including changes in meds and activitites. For me, d'cing plaquinil takes several months to show worsening, and then several months to show improvement. Having to go through this time and again to prove to different docs that I need it has cost me hugely in time and suffering. If I had documented properly, I might only have needed to make the trial once.

So, that's it for useful stuff I can think of right now. This is a great site for information and moral support. We all understand, and we all have our little tricks to help us cope. Just hang in there.

Shari

:) Hi Aggie..I am new here too. Just trying to make my way around and get to know everyone...YES they do take lots and LOTS of blood it seems at times. Let us know how you are doing...
MissRain