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Thread: Guess I won't be posting anymore

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    Default Guess I won't be posting anymore

    I got a call from the Rheumatologist today. All my tests came back as she put it "essentially normal". She said she ran tests for Sjogen's, Lupus and Connective Tissue Disease and they were all normal. So I guess I should be happy that I really don't have this disease, but I'm depressed because apparently this is all in my head and I need a psychiatrist. She did not tell me I needed one, but I feel like I do. She said that all of this does not make since and we need to kind of back off some of the meds and see where we are after awhile. I told her that I felt like I wasn't being believed and people thought I was making this up. She said that we just need to go in a different direction. You all have been very helpful to me in the short while I have been posting, but now I feel like I don't belong here, so I guess I won't be posting anymore. Good Luck to you all.

    Angie

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    Angie, Angie, Angie: I think it is safe to say that no one here thinks that you are making ANYTHING up. I also am willing to bet that most of us, if not all of us, had to go through many trials and tribulations before we found our "set in stone" diagnosis. So many illnesses have the same symptoms and many diseases are dual diagnosis as well. Don't give up and don't go away! This place is so tremendously amazing and I truly believe that the other members would want you to stay on board too. Sometimes we just need a place to belong and we will all continue to be here for you girlfriend! Sunshine101

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    Default JUST WHERE DO YOU THINK YOUR GOING?

    Angie - Finding this group of friends came as no coincidence. Please don't feel like "it's all in your head" - remember medicine is not an exact science; it never will be. Don't be satisfied with accepting that there's nothing else to do.

    I agree with Sunshine - we all are looking for a place to belong; a place to share our thoughts, beliefs, concerns, tears....and yes, even laughter. There are a few funny ones left in this world - and God knows we have enough to cry about....so why not laugh a little.

    So stay strong, hold on - and Sunshine is right. A since of belonging does a heart good.

    Life is good, love is better
    Browneyedgirl

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    Default You're the best!

    Thank you so much for your words of encouragement! You all are the best there is. I am grateful that you still want to include me because Lord knows I need someone there for me who has and is going through this too. My husband is absolutely out of this world wonderfully supportive, but he can never truly know how this feels. Since you all don't mind I'll stay a little longer. I have to drag myself to work now. I hope you all have a blessed day.

    Angie

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    I WISH I had a dollar for evertime I was told that it wasn't lupus, or it wasn't this or wasn't that. They thought they could tell me what it wasn't and make me feel better when all I wanted was to know what it WAS. It took me seven years, lots of denial on both my part and the dr, many drs and I now have a firm diagnosis. So just because those tests came back that way THIS time doesn't mean you are losing it. Even now on my worst days mine can come back normal. As I said before, it took a biopsy from my back, along with all my other symptoms to get my dx. So please don't give up and for sure, don't go away. Just take it one day at a time and ask that dr of yours what it IS, tell her you don't care what it isn't at this point but you need some answers. {{HUG}}

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    Default I know I am taking this too hard

    Thanks Tracy Dawn! I know I am taking this too hard, but I get so tired of trying to make the doctors believe me. Sometimes I just want to stop all the meds and just forget about the whole thing. However I know if I did not take the meds there is no way I would be able to function. Well I did ask the Rheumy what it was and she said she had no idea as none of this made any since. She said that with the symptoms I am having my labs should be really really positive, but they are not. I told her again that I didn't want it to be Lupus, but I do want to know what it is so I can treat it and live my life. Gotta go back to work now. Talk to you later!

    Angie

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    8)
    ANGIE,
    NOT that I want you to have LUPUS or any related disease,but to go from REAL symptoms to say it's all in your head is well.....BS.

    For you to have dealt with all you have there is NO WAY that it is NOTHING.
    It may not be LUPUS but it may be a form of LUPUS, or another
    AUTO-IMMUNE DISEASE.

    It took a GOOD 6 months of doing alot of the SAME TESTS until I was finally diagnosed with SLE and DISCOID LUPUS.

    THAT is the TOUGHEST part of this disease....attempting to diagnose it is the HARDEST part other than trying to get rid of it.

    You'll get 50% of the time FALSE POSOTIVES AND FALSE NEGATIVES all depending on how your system is doing that day.

    If your tired you may come back with a DIAGNOSIS OF POSOTIVE because certain enzyme levels are LOW, but if your well rested and feeling GOOD it may come back NEGAITVE.

    DO NOT LET ONE DOCTOR make you think that your NUTZZZZZ :shock:

    ONE DOCTORS DIAGNOSIS DOES NOT MAKE A FULLY EDUCATED DECESION.....
    If he's so sure that you do not have LUPUS and HE"S POSOTIVE YOU NEED A PSYCHIATRIST.....maybe it is he/she who need BETTER BEDSIDE MANNERS !!!!!!!

    I HATE these DOCTORS who think because they wear the WHITE COAT they THINK they know it all.
    With all the problems I have auto-immune and physical I have done more research and found out more treatments and possibilities than my doc has.

    Alot of these DOCS also look at your insurance and see how much they'll cover and run the bill to that point and then make an UN-EDUCATED DECESION !!!!!

    If you are going to a man then go see a woman.....or visa -versa.

    WOMAN DOCTORS tend to know more about LUPUS mainly because only 1 out of 1,000 who have it are MEN !!!!

    Plus what KIND OF RHEUMOTOLIGIST has the training to say YOU NEED A PSYCHIATRIST????...
    Personally I would have taken that remark as an INSULT asked for copies of all my records and LEFT ABRUPTLY !!!!

    Where you will find some of the best yet the youngest DOCTORS who will do everything in there power to get the right DIAGNOSIS with no QUESTION is by going to a teaching HOSPITAL.
    IE; ROBERT WOODS HOSPITAL, UNIV OF PA , any UNIVERSITY HOSPITAL.
    This way you have one main doctor but you have a DOZEN very intelligant, and very curious yound interns out there that will do a test that the KNOW IT ALL may not...which 9 out of 10 times leads to something else which puts them on course to get the right answers.

    MY LUPUS was DIAGNOSED when I was in for my THYROID problems and had numerous DOCTORS tell me I was negative for LUPUS until I went to ROBERT WOODS FOUNDATION in NEW JERSEY.
    There they went through my LIFE history, they did genetic tests, they did every possible test that may cause even ONE symptom that LUPUS PRODUCES.

    I would be the FIRST one to CONGRATULATE you on the GOOD NEWS but that part about it being in your head well NOT ONLY was it out of line and RUDE...it is not in his/her rhelm of knowledge....and quite frankly way out of LINE :shock:

    Ask yourself do I have these symptoms???......
    If you have more than 50% of the NORMAL symptoms then may I suggest you go to another RHEUMOTOLIGIST and POSSIBLY see a HEPATOLOGIST....a doctor who is into BLOOD....
    You would be surprised the difference in what test that one will do that the other won't.

    DO NOT allow them to make you feel even worse and waste VALUABLE time going to a psychiatrist.....
    Let me tell you this..... ALL and I mean ALL psychitrist's are trained to diagnose SOMETHING within 15 minutes of talking to you....
    I found this out through a family member who is one !!!

    EVERYONE has some kind of mental traits( sp?) that can be classified as something....I GUARANTEE they will go from DEPRESSION to possible
    BI-POLAR...to - a SOCIAL PROBLEM making you feel like your nuts and MUST HAVE ATTENTION !!!!

    TRUST ME IF you go that way I can GUARANTEE you that they will put a LABEL on you and one you do not need nor want nor deserve.

    Just get your records and go to a HEPA/ OR HEMA tologist and let them do there thing.
    DO NOT IMPLY that YOU THINK it is LUPUS...just give em all your symptoms ( and may i suggest a WOMAN) and let them do the diagnosing....then as they are coming close to some kind of DIAGNOSIS then you pull out all your past test and compare what they did vs. what the OTHER JERK with the BAD BEDSIDE MANNERS did and said and I'll bet you get different answers.

    If you have as many symptoms as you do that the first Doc at least THOUGHT it was LUPUS then there must be a reason why he/she went in that direction.
    You may have a THYROID problem, or chronic fatigue, or Hormonal problems....but you certainly DO NOT need a psychiatrist.

    PLEASE DO NOT GO TO ONE AND LET HEM START MESSING WITH YOU !!!
    YOU WILL END up in a mental facility while they fool around and decide if your stable....well if you were not stable then you would have never been able to put all this together.

    YOU OWE it to YOURSELF, YOUR FAMILY to GET THE RIGHT ANSWER not ONE DOCTORS FINAL DECESION and RUDE RECCOMENDATIONS !!!!

    Think about all I said and make your decesion, but I sincerly DOUBT that a psychiatrist is gona be of ANY help..
    If anything they'll make make the situation worse as I said they MUST DIAGNOSE you within 15 minutes with something....and they will and that is all PRECIOUS TIME YOU NEED TO BE SPENDING ON GETTING THIS ONE THING SATISFIED IN YOUR MIND !!!

    I hope you do the RIGHT thing and PLEASE take another chance but this time try a TEACHING hospital and a WOMAN DOCTOR.

    Let me know how you do.....

    St James
    8)
    MY GOAL IN LIFE IS TO BE AS GOOD A PERSON AS MY DOG ALREADY THINKS I AM.....

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    Default Wow Thanks St James!

    I had no idea you all would be sooooo supportive of me and my trials and tribulations.This is exactly why I came to this place. I might have misrepresented what my doctor said though. She did not come out and say I should see a psychiatrist, she made me feel as if I should. After reading your post and all the others I have absolutely no intention of being labeled a mental case. I know how my body is and there is something wrong. The thing that has been the hardest for me to understand is how the Rheumy can go from saying "That's a malar rash if I have ever seen one and with all your symptoms this is SLE and we need to get right on treating this aggressively!" to "Your labs all came back negative so I think this is probably not Lupus we are looking at and we should step back and take some time and back off the meds." in the course of a week. Why is so all fired important to have that bloodwork be positive. The ACR criteria makes it seem like it only has to be 4 of the 11 at any one time. It does not say that one of them has to be positive bloodwork. Well I have to go eat the wonderful dinner my terrific husband cooked now. Thanks for everything and I guess I still belong here.

    Angie

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    Angie;
    I can only "ditto" what everyone else has said to you (especially St. James) and to let you know that you do, indeed, belong here as long as "here" is where you want to be!!
    I am happy to see that you've decided to stay and we are all breathing a sigh of relief that "Angie is staying home with the family".
    Please keep us advised of what is happening and we will always continue to help you as much as we can!

    Peace and Blessings
    Saysusie

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    Default Thanks Saysusie!

    I really feel like God sent me here for a reason! It may take me awhile to figure things out, but I am not going anywhere until someone makes me.


    Angie

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