[Angelwngs25]

My grandma has been asking me ever since I was told by the first Rheumatologist that I saw that I don't have Lupus. Why is Lupus so important? Why do you want the Lupus diagnosis?

I tell her I don't want it, but I want the truth and if that's the truth I want it, because I need to be treated. I tell her I know my own body and I think I would know by the symptoms and how they make me feel and by my own body that I have Lupus. But nobody listens to me doctor wise.

It makes me want to fn scream at her and fn call her back multiple times and keep hanging up on her. Just to piss her off. Because what she says pisses me off. I sometimes wish she was fn dead because no matter what it's about she is sooooooo fn aggravating. Because she doesn't ever know what the f she is talking about. Ever. She is like fn stupid or something.

Sometimes I think what it would be like to kill her so she would knock it off. But of course I would never do that because I would cry if she actually did die. I would get put in prison. Not to mention the horrible karma I would have. So don't even think from this post I would ever do that. I have had these homicidal thoughts towards her for 13 years atleast. But I have never done anything about them and I never will. I really just could use a

[jacky8807]

Hey there
So you sound like your raging at the moment
Its hard when we have difficult ppl in our life
If u dont already have a therapist i would suggest getting one
That could really help you deal with your feelings as well as come up with a game plan on dealing with the conflicts between u and your grandmother
Goodluck
Oh and heres a

Why do you want a lupus diagnosis if it has been ruled out? How many doctors opinions have you had? I know of people who have developed symptoms after reading about it but do not actually have the problem they think they do. Could this be the case? Or could it be something similar but not what you suspect?

I really agree you need therapy if having homicidal thoughts. Especially over something so petty that she doesnt agree with you.

[Angelwngs25]

Originally Posted by jacky8807

Hey there
So you sound like your raging at the moment
Its hard when we have difficult ppl in our life
If u dont already have a therapist i would suggest getting one
That could really help you deal with your feelings as well as come up with a game plan on dealing with the conflicts between u and your grandmother
Goodluck
Oh and heres a

So am I basically just feeling these symptoms because I have "Convinced" myself I have Lupus like the person below you said? Cuz I don't think that's even possible. How do I make my hands swell? I am being basically being mocked at by this person. I need a .

Don't take offence certainly not laughing at your distress just offering an educated opinion on what *might* be going on. How many opinions did you seek? Sometimes it can be hard to get a diagnosis for something like lupus. There are many other conditions that present similar symptoms. What are your symptoms? How did you self diagnose lupus? It wasn't docto Google was it, cos he can come up with all sorts of diagnosis. If you haven't had a second or third opinion from a trained professional it is irrational to get upset that they won't diagnose you.

[quasicrystalline]

I don't think jacky8807 was doubting your symptoms as much as offering you emotional support and suggesting you seek help for those homicidal thoughts. That's all. Please don't assume we're against you here. Most all of us are going to be on your side!!

Here's another hug for you

I understand your frustration. Before I was DX'd with Celiac disease, it was very frustrating when family members didn't take my physical symptoms seriously. It's still hard for some people who know me to understand how much trouble gluten can give me, but I try to forgive them (Can be hard at times, for sure!) and chalk it up to not knowing much about the disorder.

Best of luck to you. Autoimmune disorders, like lupus, can be very, very hard to diagnose, and I hope you find an understanding doctor who can get to the bottom of what's causing the symptoms, regardless of what it ends up being the cause.

[Crazy Hitch]

(((Angel)))

I can imagine that this is difficult for you indeed if you believe you have Lupus and have not had this diagnosis confirmed and it makes it harder for you when you are questioned by your gran and this enrages you.

You said you could really just use a in your post so here you are:

((((angel)))).

I hope that you are able to work through these emotions.

It can't feel very comfortable feeling like this all the time.

[~Christina]

I'm sorry your in such a horrible raging place right now.

I went through about 8 Doctors when I started have all kinds of problems. I was so frustrated that I wasn't being given a diagnosis, test after test after test. I am not kidding over the months I know at least a 100 vials of blood was taken for testing.

As for your grandmother making you so angry that you are kind of losing it and actually thinking of harming her over it ... Can you just not talk to her, Stay away from her, If she does ask you a question just ignore it and walk away, hang up the phone etc.

Regardless of second third or eighth opinion you know your body and if you feel something is wrong then follow through until you find the help you need..

I do think a Therapist could be helpful in many ways while your trying to manage your physical problems.

I hope you find some peace and inner balance

[Angelwngs25]

OMG...someone in another forum is stalking me and trying to find out my name and where I live so they can have me arrested for saying I want to kill my grandma. Even though I said in this thread that I would never do that. And I just told my grandma what I posted and she says she knows I would never kill her. So I think I'm okay if they do find out my name and where I live. But they are really fn pissing me off with their stalker type behavior.

[jacky8807]

I think you need to get some further help..
I am not insulting or judging you but all your posts point to the fact you need more stabilization
Good luck and take care

[sadandconfused]

Are you under the care of a psychiatrist right now and are you taking your medications as prescribed? The fact that the thought of killing your grandmother over something trivial like this crosses your mind then actually writing it in a public forum suggests you may need more help than you are receiving now. Sometimes medications need to be adjusted, I think this should be your highest priority. Maybe some of the other symptoms you are having will then go away and you will feel better overall.

Angel,

I hope that you will find an understanding and skilled primary care doctor (maybe an internist) who will work with you and refer you to the right specialists to find the right diagnosis for you.

I was lucky enough to have an internist who did that for me during the time that it took for my autoimmune disorder to be diagnosed.

I'd also like to say that I experienced great difficulty in getting psych medications to work really well for me during the time that my autoimmune disorder was not being treated. The psychiatrist that I had at that time told me that she had often seen that happen.

Also, regarding rheumatologists or neurologists or other specialists - while a few might be okay with you telling them what you think you might have, most of them just want to know what symptoms you have. They will ask the questions and you answer them. That's how they like it. If you think they have misdiagnosed you, you try another doctor. (It took me three different rheumatologists before I got a correct diagnosis and appropriate treatment.)

Best of luck to you. Sometimes it's helpful to have another person who's supportive of you go with you to a doctor.

[krisakira]

We want the diagnosis because it puts a name to what we have been dealing with, and gives us a treatment plan. If you get the diagnosis of lupus, they can treat it, and your pain can be less or whatever symptoms you're having. If you don't get the diagnosis, you're left with whatever you still have and can't be treated until they figure out what it is. No one WANTS lupus, but if you do have something wrong, you want to know what it is at least. I am in the process of being diagnosed with lupus. I was positive on bloodwork first time around but negative on bloodwork second time around. I think it was because I am not in "flare" anymore as much as I was before when first bloodwork was done. But my symptoms are real and my rheumatologist has held off officially diagnosing me, but is still treating me as if I did have lupus, by putting me on plaquenil. If it's lupus, my pain and fatigue should lessen in about 3 months. In that case, i sure as hell hope it's lupus because its treatable. Hope what I have said has helped.

[quasicrystalline]

I think you worded that very well, krisakira. I went through a similar process when I was DX'd with Celiac disease. I was both upset and relieved when we discovered gluten was causing all my problems.

Autoimmune diseases are especially hard to DX. You definitely need an understanding doctor who's willing to establish a working relationship with you and get to the bottom of it. Angelwngs25, my suggestion to you is to not automatically cut out the doctor when they don't immediately accept lupus as the diagnosis—he or she is most likely going to want to rule out other causes. From reading your threads here and elsewhere, it seems like you've been through a lot of doctors. Many conditions can mimic lupus, and they want to be sure to treat the right one, so they can eliminate your symptoms! Also, try to be patient with them. I know it's hard, but when you get mad at them right away, they'll be less willing to work with you.

[Angelwngs25]

Originally Posted by sadandconfused

Are you under the care of a psychiatrist right now and are you taking your medications as prescribed? The fact that the thought of killing your grandmother over something trivial like this crosses your mind then actually writing it in a public forum suggests you may need more help than you are receiving now. Sometimes medications need to be adjusted, I think this should be your highest priority. Maybe some of the other symptoms you are having will then go away and you will feel better overall.

I'm gonna suggest to my temporary psych that I may need my Ziprasidone upped again. Right now I'm on 160 MG. And it's definetaly helped in other places but I think I need a higher dose.

[Angelwngs25]

Originally Posted by krisakira

We want the diagnosis because it puts a name to what we have been dealing with, and gives us a treatment plan. If you get the diagnosis of lupus, they can treat it, and your pain can be less or whatever symptoms you're having. If you don't get the diagnosis, you're left with whatever you still have and can't be treated until they figure out what it is. No one WANTS lupus, but if you do have something wrong, you want to know what it is at least. I am in the process of being diagnosed with lupus. I was positive on bloodwork first time around but negative on bloodwork second time around. I think it was because I am not in "flare" anymore as much as I was before when first bloodwork was done. But my symptoms are real and my rheumatologist has held off officially diagnosing me, but is still treating me as if I did have lupus, by putting me on plaquenil. If it's lupus, my pain and fatigue should lessen in about 3 months. In that case, i sure as hell hope it's lupus because its treatable. Hope what I have said has helped.

Thank you. Can we start having PM conversations so I have someone who somewhat understands?

[krisakira]

Yes PM me please