Why wear a ribbon?

"I wear this ribbon because Alzheimer's in in our family, I have fibromyalgia, I'..." (igimom)

MDJunction to me

"I am so happy to be a part of the MDJunction family! Where I used to be alone, I now have friends whom inspire me, comfort me, support me, and do not judge me. My new life began October 17, 2008. I weighed in with severe depression, social anxiety disorder and avoidant personality disorder. I was born with complications but I am fighting for my life and I will survive!!" (apieceofwork)
We comply with the HONcode standard for trustworthy health information:
verify here.
Lupus Online Support Group
A community of patients, family members and friends dedicated to dealing with Lupus, together.
Join This Group
Group Home   Forums   Articles   Members (352)   Diaries   Leaders   Guidelines
Related discussions:
<< Start < Prev 1 2 3 Next > End >>
09/26/2008 10:34
fibroforever
Purple Ribbon
Posts: 898
Group Leader

Send a PM
Give a Hug
This might be a stupid question on my part. But, what is IDA?

What tests came back positive for me? Well... my ANA was a positive speckled ANA. The DNA was negative though. My titer level has been 1:80.

I'm not sure what to tell you to think. When's your rheumy appt.? Have you gone yet? I'm curious to see what they told you this time.

I've been "trying" not to be so stressed out over test results and doctors opinions. I mean... I know how my body feels. Whether they get it right or not. And they do seem to try and treat the symptoms.

Keep us informed.

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
Reply  


10/02/2008 15:14
Mommyof1
Purple Ribbon
Posts: 29
Member

Send a PM
Give a Hug
lol sorry IDA is iron deficiency anemia. My rheumy appt is nov 12th. thats the soonest i could get in. ironically its 5 days after my 21st bday. I will keep you updated and thanks so much *hugs* and hope everyone is as well as can be expected!
Reply  


10/02/2008 15:39
polivito
Purple Ribbon
Posts: 7
New Member

Send a PM
Give a Hug
I have IDA and although my doctors in the past thought that it was a different issue from my Lupus my current doctor says that it is a 'syptom' of the Lupus. It got really back in March and for the past couple of months I have had weekly injections of iron (IV drips). My numbers have gone up a little but I don't feel any better and have a lot of nausea and weight loss and of course lots of fatigue. Today I went for my treatment and my body figured out how to reject it! After about 45 minutes of the drip I had a bad allergic reaction to the iron and my breathing passage started to close and I got a rash and swelling all over my throat and face. They had to give me injections of benedryl and steroids and then put me on an IV of each for about 45 minutes. So now I can't have any more iron. Anyway, you didn't need to know all of that but yes, IDA seems to be connected with Lupus, at least in my situation. I hope you feel better soon. BTW, I have been seeing a hemotologist for the anemia and a rheumy for the Lupus stuff.
Paula

Popular posts by polivito
    Santa Monica
    vibration
    Chest Pains
Reply  


10/04/2008 16:39
NoodleMom10
Gray Ribbon
Posts: 32
Member

Send a PM
Give a Hug
I went to a rheumy (hadnt been to one yet, my primary doc diagnosed me) last week and she said that a person cannot be diagnosed by a primary doc that they need a rheumy. Is that true? She says that until she sees the results of my labs that she ordered she is not not sure that I have lupus. So if it is not lupus then why have I been so sick and in such pain? Why couldnt I get out of bed for five months? Why did I need my HubbyMan to help me with things like dressing and getting out of the tub?

I go on monday to her again. My labs should all be in by then.

Kasey

Kasey wife to my HubbyMan and Mom to my ten kiddoes
LuvBug 25, BooBear 23, FroggyGirl 19, Butterfly 16,
GuitarMan 15, LittleMiss 13, LittleMan 13,
BrainyBoy 11, Skooch 8
and my sweet Beanie in Heaven
Reply  


10/06/2008 14:38
Mommyof1
Purple Ribbon
Posts: 29
Member

Send a PM
Give a Hug
wow Paula. I was wondering if it could at all be connected. I had it once previously at age 15 when I had everything else happen(seizures, severe depression and just bizarre behavior type thing) but they never treated it. Idk why. I will definitely keep that in mind. I'm on 325 mg tabs of ferrous sulfate once a day and it has eased the fatigue but hasn't done much for anything else and nothing for the pain or shortness of breath. I cant wait to go to this rheumy and get this taken care of! Thanks again for the input *hugs 2 all* -Brit
Reply  


10/06/2008 14:41
polivito
Purple Ribbon
Posts: 7
New Member

Send a PM
Give a Hug
I don't want to sound discouraging but just going to a rheumatologist isn't going to fix anything. Lupus is so sneaky and so difficult to treat and even to diagnose that I often get more frustrated after going to the doctor. I hope that isn't what you experience but don't be surprised if it is.
Paula

Popular posts by polivito
    Santa Monica
    vibration
    Chest Pains
Reply  


10/08/2008 15:44
Mommyof1
Purple Ribbon
Posts: 29
Member

Send a PM
Give a Hug
I understand and am prepared for a battle to be honest. Im going in there expecting it to take years..so either I will be right or I will be surprised and it will happen sooner lol Thanks though for the warning Take care -Brit
Reply  


10/08/2008 17:13
Jan52
Purple Ribbon
Posts: 12
New Member

Send a PM
Give a Hug
I am not sure what your Rheumatologist means by a GP can't Diagnose Lupus. They can and they do. Mine did... and she was right. But I'm sure you'll find out that lab tests are not the only thing that will diagnose Lupus. Some labs can be negative and you will have enough diagnostically positive symptoms that you will be diagnosed with Lupus anyway. I think there are about 11 things that accompany Lupus which they use to help Dx. I hope you get the answers you need but for your sake, I hope it's not Lupus. Stay in touch. It helps to have people in the same boat you are.

Popular posts by Jan52
    Lupus & Fibro
    Lupus & Fibro
    Flares and Fatque
Reply  


10/09/2008 06:25
Mommyof1
Purple Ribbon
Posts: 29
Member

Send a PM
Give a Hug
The 11 criteria used for diagnosing systemic lupus erythematosus are:

malar (over the cheeks of the face) "butterfly" rash

discoid skin rash: patchy redness that can cause scarring

photosensitivity: skin rash in reaction to sunlight exposure

mucus membrane ulcers: ulcers of the lining of the mouth, nose or throat

arthritis: two or more swollen, tender joints of the extremities

pleuritis/pericarditis: inflammation of the lining tissue around the heart or lungs, usually associated with chest pain with breathing

kidney abnormalities: abnormal amounts of urine protein or clumps of cellular elements called casts

brain irritation: manifested by seizures (convulsions) and/or psychosis

blood count abnormalities: low counts of white or red blood cells, or platelets

immunologic disorder: abnormal immune tests include anti-DNA or anti-Sm (Smith) antibodies, falsely positive blood test for syphilis, anticardiolipin antibodies, lupus anticoagulant, or positive LE prep test

antinuclear antibody: positive ANA antibody testing

I have the following out of the list:

-photosensitivity(i burn very easy and even as a child applying spf 50 sunblock every 6 hrs and wearing a t-shirt i still got blisters)

-ulcers(I have mouth ulcers in my mouth, gums, throat, tongue, etc for as long as i can remember both painful and not)

-arthritis(thought I had growing pains growing up but read up on it and they only occur at night..I had my pain day and night. Now I have sharp pain in my virtually all my joints and a leg ache that can go from my feet to my hips. I also have a warm feeling from my knees up into my hips as well)

-brain irritation(i was diagnosed with idiopathic seizures(unknown cause) at age 15 and still have abnormal brain waves. Also suffered at 2 yr depression with problems with "cutting" etc.)

-blood count abnormalities(at 15 was told to have iron deficiency anemia but was not treated. Was diagnosed again a month or so ago by my PCP and put on 325mg of ferrous sulfate once a day)

She also did an ESR and ANA test which were both negative. However we all know there are more tests to be done and like you said they go by symptoms as well which I have more of. Looking and researching hasnt turned up any other possible disease that fits my symptoms as well so Im still going with Lupus. Hopefully I will still get some answers. Questions, comments are welcome Thanks for the support -Brit

Reply  


10/09/2008 10:35
Cori
Purple Ribbon
Posts: 1242
Senior Member

Send a PM
Give a Hug
Wow this is quite the deal to Dx isn't it? How frusterating, I am going in tomorrow to my doctor to discuss possible Lupus.


Sometimes it's hard to walk, talk, or even know what tomorrow brings. But as long as I have a smile on my face I can give a little bit of sunshine!
Reply  


<< Start < Prev 1 2 3 Next > End >>

Start a New Discussion

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice. Read more.
Contact Us | Bookmark Us | Add a Doctor | For Doctors | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | Advertise
Copyright (c) 2008 MDJunction.com All Rights Reserved