View Full Version : If I get another diagnosis or misdiagnosis, I don't what I'll do

01-08-2012, 08:10 AM
Ok so some of you know that I have been diagnosed with lupus (sle and discoid). I've also been diagnosed with Sjogrens and the other thing (can't think of it right now).
Anyway, I go to the doctor on this past Friday and the doctor tells me he doesn't think I have Lupus at all. Now he thinks it's sarcoidosis because I have shortness of breath and I cough a lot. He also thinks there is something wrong with my brain. I am so extremely crazy right now. I have been crying all day yesterday and the tears have started again today. I have faith in GOD but this just seems so overwhelming. I am extremely depressed. I am angry to the point that I am hateful. I actually felt like taking my life yesterday but I was too scared to do it. I don't really want to die. I just want to stop hurting, crying and getting misdiagnosed with stuff.
If I can stop crying, I may be ok. But the tears won't stop. I know that there are people worse off than me, but everyday it seems to be something else. When I spoke to my rheumy and showed him the lumps under my skin, he first ignored it and as a second thought, he determined it COULD be from sarcoidosis. I feel like a science project.

01-08-2012, 08:16 AM
Oh yeah, it was fibromyalgia.

01-08-2012, 08:45 AM
I think all of us get irritated at the unknown and I personally hate it when the doctor changes their diagnosis every time you go in. Please know that the unknown is scary but taking your life is not the answer either. I too spend a lot of time crying and wanting an answer. When you don't get an answer you think is right, please consider moving on to another doctor.

Let us know how you are doing and hang in there.


01-08-2012, 08:46 AM
Hi mrstjscott,
I too have DLE, SLE and Fibro.
I am with you as with the FRUSTRATION!
HANG IN THERE, your not alone and I would like to chat more with you.

01-08-2012, 08:52 AM
Hi Riverlaken,
I am just so frustrated. My new rheumy said my blood tests were normal and whomever diagnosed me with lupus was wrong. I called the doctor who diagnosed me with lupus and told her what he said. He is supposed to speak to her hopefully, tomorrow.
I know what my body feels like and what I go through. These doctors think that because they went to school, that they know everything. And with me having medicare and medicaid, they don't really want to run the necessary tests. I need a brain scan but he wants to wait. I need a heart scan but he wants to wait. I need blood drawn but he wants to wait. But then he wants to make a diagnosis of sarcoidosis without tests because I keep complaining about being short of breath, no matter what I do. My legs and feet burn so bad, sometimes I feel like I am walking on fire. Sometimes the lumps in my fingers are so hard and hurt so bad, I want to cut the lumps out myself. I literally hate most of my doctors because they SEE things going on but make me feel as if I am making this stuff up. No wonder people drink and do drugs. I understand now. I really do.

01-08-2012, 08:53 AM
I haven't been to church in quite some time. I think I will go today. I need GOD to help me before I do something I can't reverse.

01-08-2012, 09:23 AM
My blood work too, is in its normal limits ANA negative. Although, my symptoms of large protein in my urine, joint pain & muscles, hair falling out, skin lesions below the neck, cold hands and feet, chest pain on deep breaths, horrific brain fog, mouth olcers, weakness everywhere, hard to cope with severe 24/7 pain and of course, F-UP FATIGUE! Feeling sick all the time and stiffness that really blows. I am sure I left out more symptoms, my point I guess is, Take a deep breath and research as much as you can, take CHARGE of your care, ask your doctor questions, make notes before your appointments, I forget things so it helps me. Now, I am seeing a new doctor myself and he says no fibro, just lupus, well I wonder why ? I see him again this Tuesday. God is the best and I know a great connection helps.

Again hang in there!!

Write back soon and =============> Hug going your way.


01-08-2012, 10:09 AM
I'm sorry you're doing so bad and the docs are playing Ring Around the Diagnosis. I remember when I went to a different doc and he tried to say that I didn't have Lupus. I felt like telling him to go take a flying leap! I also understand about the Medicare/Medicaid and the different treatment that you get because of it. When it was just my daughter and I, we had it and the difference in treatment was unbelievable! Tell the doctor that you don't want to wait - if need be you can file a complaint!

As far as church - I always feel better after going! I didn't make it this morning. Normally I watch online if I don't make it, but I actually fell back asleep after I decided I wasn't going to make it. If you'd like I can send you the link for the times when you're not up to going. ((hugs)))

01-08-2012, 02:10 PM
I'm sure that you have seen it here on many threads that we all go through this. Many docs seem to be arrogant and don't want to accept the diagnosis of another doc.
I truly don't understand why they can look at a previous positive blood test and then declare that it is wrong just because the most recent one is negative. Duh! couldn't it mean that our meds are working and suppressing the inflammation? I think that Saysusie has said it - "once a positive blood test, that's a positive dx."

At least this doc is saying that you do have an AI disease. As you know, there are a lot of them and it seems to be difficult to tell one from another when diagnosing. I think that they are all spread out on a spectrum, and our bodies individually pick and choose from the symptoms - one from column A, two from column B, etc.
At least the treatments for these different AI diseases is generally the same, so no matter which ones you truly have, the treatment will help.

Try to look at it that way and try to work out what meds will work for you. I hope that things get better for you soon.

01-08-2012, 04:19 PM
Hi mrstjscott,

(((huge gentle hugs)))

I know exactly what you're going thru!!! I'm going thru the same thing! My GP/PCP diagnosed me with Lupus one month ago. I went to see a Rheumy the other day. He totally brushed me off, brushed off everything I said, then completely dismissed my doctors diagnosis and said I don't have Lupus - I have fibromyalgia. Then he told me my doctor would be the one to treat my fibro. *sigh*. So still no medication, a world of pain, and it's driving me nuts!

We all understand what you're going thru! If you ever need someone to vent to, please don't hesitate to come on here and vent away! You're very welcome to send me a PM too if you want. Please know that we are all here for you! Sorry, I normally write more, but I'm on my phone right now. I have trouble typing on my phone, but when I saw your message, I wanted to come on and give you more support.

One more (((huge gentle hug))) before I go :)

Blessings, Love & Aloha,
Ty :)

01-08-2012, 04:22 PM
Oh, there's more of what I've been going thru and some fantastic advice in the post "Conflicting Doctors". If you have time, please read it. The advice given really helped me!

01-10-2012, 09:58 AM
I understand this completely! Normal tests and doctors saying there is nothing wrong, then finally a positive test, and that elated feeling that finally someone might be able to do something. Then you go see another doctor and you get the whole, well maybe you have this instead thing. Right now I'm all for it, because I myself and not 100% sure in my diagnosis of SLE, but being treated for something, anything, made me leave it be. Like was stated many Auto-immune disorders use the same treatment, so I was under the frame of mind, if I have something else and they treat me for SLE and it works, I'm not going to complain!

Recently though, the amusing one was when one doctor made a diagnosis, then decided he was wrong, and changed it, which btw he's kind of wrong again. The most recent diagnosis is right, but isn't causing my symptoms :/

01-10-2012, 09:54 PM
Why can't they admit that they just don't know - and treat the symptoms?