want real responses not an automated text book answer

1roswell · Not So Newbie Joined: 18 Feb 2008 Posts: 5

Can anyone give me the magical dialogue to say to these doctors to lead them to proper tests and diagnosis? I believe strongly that i have lupus, am in the beginning of all this hodge podge, and this is my , what I would call, my 2nd flare up.

I have a positive ANA with homogenous pattern, had started with severe mouth sores this time, then very sick with flu,had severe kidney pain that landed me in the hospital(tests negative,but thought to have passed two separate kidney stones), bp uncontrollable at 200/130 for 8 days, ended up with thickening of the heart muscles, have peripheral neuropathy, pleural effusions, heaviness in my chest, joint pain, shingles(which I get every 6 months,tested).

and I had 2 years ago also..for the 1st time.. lasted about several months ... this time i just quit my job I feel so bad..

I have an appointment with the best neurologist in the area that i saw 2 yrs ago, office said he sees lupus patients but should I cancel and go to a rheumatologist?

I also am anemic, have a severe vitamin d deficiency, and low b-12.

Thank you for all ur support.

Oluwa · Posted: Mon Feb 18, 2008 7:15 pm Post subject:

"I want all the test for Lupus to be conducted...and any other connective tissue illness, autoimmune disease....RA, SS, FM"

Gee I don't know how to answer it without using the word criteria...4 out of 11? Symptoms are accumulative and you don't have to have the royal flush hand, all symptoms at once to have Lupus.

Positive ANA could be something else..could be.

Are they treating your symptoms.

Rule in, rule out other diseases...just bring a list of all your symptoms, even the smallest detail, dates..and any correlation of foods, exercises, changes, stress made to ignite this recent flare..

Isn't much to go on, but hope it is something without the standard text.

Keep searching for your wellness,
Oluwa

sits_inthe_corner · Posted: Tue Feb 19, 2008 3:44 pm Post subject: Hi 1roswell...

Just keep at them...they send you away....you come right back the next day and say gee doc I'm still feeling sick with this and this and this and this....

My family doctor got sick of me lol and I threatened to start smoking again cause doing all the healthy things seemed to be making me worse. That's when she finally refered me to a specialist.

Make the list of your symptoms. Give as much detail as you can remember.

rob · Bear Joined: 12 Feb 2008 Posts: 681 Location: Maine

Iroswell,

I don't know what the magical dialogue is, but two thing help me. Persistence, bordering on becoming a pain in the you know what. And knowledge, as in, my (your) own. I am always surprised at how many people there are in the medical world who are clueless when it comes to Lupus. You know your own body better than any doctor. Read as much as you can, be a persistent pain in the posterior, and you will get results. And don't hesitate to talk, like you are talking to us here. Nobody here will ever say "well you don't sound/look sick to me". And you can unload here without fear of being labeled a "whiner", or any other inaccurate, insensitive names you may hear from those who don't understand. You are your own best advocate.

Rob

1roswell · Not So Newbie Joined: 18 Feb 2008 Posts: 5

It's so nice to have some advice and support that you friends give on here. Ur each a wealth of information and advice, anybody have a list of all the tests they've been thru? It gets up there doesn't it? and what's the worst test? and how is a spinal tap and do you ever need a bone marrow extraction? My brother died at 49, right after he had one, before he even knew what the results were, I'm a little afraid of that.

Thanks again fellow comrades!

roswell

AnnMarie · Little Guppy Joined: 02 Dec 2007 Posts: 39

Hi,

I understand your frustration. Stay on it.

The other night while channel surfing, I watched a TV show called "Mystery Diagnosis". There was a woman on the show that was in her fifties and had symptoms of Sjordrens disease, a close relative to Lupus. She had been sick since she was a teenager. At age 50, she found a doctor who was suspicious of all her symptoms. She had been hospitalized numerous times, yet no doctor had considered all her symptoms to add up to a disease. They were treating one symptom at a time. She indeed had Sjorderns and had suffered for 35 years, lost her job, her home, all because she was too sick to work and was not diagnosed with anything. Sometimes, we can easily be dismissed. The good news, is she is doing immensely better since she has been treated for the disease.

I guess what I am trying to say, is be diligent.

Best wishes,
Annmarie