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Thread: A Long Road

  1. #1
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    Default A Long Road

    Hello everyone !! This is my first post. I found your site a few days ago and have been reading feverishly ever since. I am 40, two kids...my daughter is a Junior in College (Dean's list ) and my son is a senior in High School and is a brilliant composer/musician. (Mom's have to brag when they get the chance. ) I am single. Still working on a diagnosis. I have been suffering for over 9 years with severe pain and fatigue, and a million other symptoms that I have always attributed to something else or simply got "used to " because I never got any answers from the MANY doctors and specialists I have seen over the years. I am soooooo tired of hearing "Oh, that's nothing to worry about"...or having my pain treated like I simply ache...or being blatently treated like I was a hypochondriac...or "I'm baffled, come back in 3 months" with NOTHING being done to see what is wrong with me. I have done alot of reading on Lupus and have had a few doctors suggest it as a possibility, even had a positive ANA...but with NO follow up. I am FINALLY seeing a rheumatologist at the end of October who specializes in Lupus. I know you will understand this...I am excited about this appointment...looking forward to it like it was Christmas....I am soooo desperate for a doctor to take me seriously....and the best present of all would be an actual diagnosis!!!!!!! A diagnosis is so important to me because when you spend years hearing that it's all in your head, sometimes you start to believe it. I daydream about going back to some of the doctors I have seen and saying "I told you so !!! I'm not crazy !!! " LOL It has been a long road of frustration, depression, and pain. I have come to terms with the fact that this is not something that is just going to go away, but I would love to have the hope of some treatment of symptoms, some hope of relief. I have learned so much from reading all of the posts here and want to say a big THANK YOU to everyone already...I know that others out there understand.

    Jackie
    "Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind." Dr. Suess

  2. #2
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    Welcome aboard jackie65.

    My heart goes out to you, if ever you feel the need to vent , remember we are always here to offer guidance and support to you
    I intend to live forever, so far so good

  3. #3
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    Welcome to our group Jakie :lol: You will find everyone here is very supportive of each other and very caring. We make a great lupus family :lol: I wish you luck when you go for your appointment with the rheumatologist. Having someone who focuses more on lupus is an atvantage. Good Luck :lol:
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

  4. #4
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    Default Hello, Jackie

    There are many of us here who understand your frustration - your description of the process of getting a diagnosis is very true - it is a long road.

    I don't want to rain on your parade here, but I do want to caution you about building too much hope on this one appointment with a rheumatologist. I know you are very excited, and with reason, but just getting in to see a rheumatologist doesn't guarantee a diagnosis, especially on your first visit. Your doctor will probably want to do more tests, and even then, he may not be able to give you a diagnosis right away. My rheumatologist described it as waiting for a picture to develop - you see shapes and colors, but you don't know what it is until the picture is fully developed. I don't want to hurt your feelings here - I just want you to be prepared emotionally for the possibility that this doctor may not be able to give you an answer right away. Lupus is so hard to diagnose because there isn't a single definitive test, and it effects everyone in a different way - plus it can look like hundred other diseases.

    Since you have seen several other doctors, it's a good idea for you to get copies of your medical records from those doctors, and review them before this doctor's visit. There may be mistakes in your records, or issues you want to bring up with the rheumatologist. Unfortunately, if some of your doctors thought your problems were psychological rather than physical, this may be reflected in their medical records. If so, this is something you may need to address up front with your new doctor, because chances are sooner or later your doctor will see those records too. Most specialists will ask for a list of other doctors you have seen in order to request your prior medical records.

    You can try to maximize the value of this appointment by being as prepared as possible before the appointment. It's easy to get flustered and forget to mention something you meant to ask, so try to write down your questions beforehand. Have a list of any prescription or otc medicines, herbs, or vitamin supplements you take. The doctor will also want to know about prior major illnesses, hospitalizations and surgeries, also any drug or other alllergies, so it's a good idea to have this information already written down for quick reference. Also, wear something you can get in and out of easily; the rheumatologist will need to examine your joints and your range of motion.

    We will be thinking about you, and hoping you get your answers soon. Please keep us posted on how it goes.

  5. #5
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Jackie :lol:
    I just wanted to also welcome you to our family. You have already seen how welcoming, supportive and informative the members here can be.
    You have already been given excellent advice by MaryCain, please keep us posted as to how your first rheumatologist appointment goes. As Marycain pointed out, you will most likely be asked to take more tests and have to, again, wait for the results before you get a final diagnosis. In the meantime, we are here to help you during the diagnositc process and we will do our best to answer any questions that you may have!

    Once Again....welcome]

    Peace and Blessings
    Saysusie

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