[bondingma]

Hello everyone! What a blessing to run across this website today. I'll try to leave this short and sweet but I really would like to get some opinions!

I am a 31 year old mother of 3 that has NOT been able to be diagnosed with anything. It started a year ago with painful reoccuring uveitis and iritis in my right eye and moving joint pain. Along with some other things like a rash on my elbows, kidney proteins being spilled in my urine, etc.

At first they did all the testing for:
Rheumatoid arthritis
Neuropathy
MS
All sexually transmitted diseases
Heavy metal toxins
Different forms of psoriasis
My DNA has been picked apart and all testing has resulted in 'nada' nothing.
I've had on 2 different days 1 pint of blood drawn and placed into different vials for numerous testing
Krohn's disease
Colitis

I've seen:
A rheumatoid doctor
Neurologist
Dermatologist
Eye specialists
Urologist
gastrologist (2 colonoscopies in 4 months!)

Now they are questioning either Lupus or my being diabetic. I'll find out on Weds. afternoon.

I don't have the butterfly rash either, but see it's not very common. I do have the rash on my elbows. I still have reaccuring uveitis and iritis in my right eye. Currently I am taking 60mg of Prednesone and numerous eye drops and gel to stop the inflammation, but it's not stopping. I have lost complete sight in my right eye and see nothing but "floaters".

SO... you lupus people.... does anyone have these symptoms or are these even Lupus symptoms?:

Uveitis
Iritis
Numerous kidney stones/infections
rash on elbows
moving joint pain
nerve pain and inflammation
IBS (irratable bowel syndrome)
depression
Extreme anxiety

Any suggestions are appreciated! You are awesome!

Stay strong, live well

Your new friend,
Gina

 

[TeriJ]

[SIZE=24pt]
Welcome Gina[/SIZE][SIZE=14pt]

Sounds like you have something. The doctors aren't sure what it is. My search for a dx lasted 6 years. Don't give up. Write all your symptoms down. Good Luck

Teri[/SIZE]

 

[helloos]

Hi Gina.

I can see why you are fed up with testing. Unfortunately all of us can relate to this one. I went through cancer doctors, infectious specialists, dermotologist, urologists, gynocologists and rhemotologist.

I guess we all have been poked here and there. As you will read, it sometimes takes years to get a diagnosis. From what you have said, you are on your way to one.

I hope that they do figure this out for you. Some of your symptoms do sound Lupus like, but also can be from other diseases, etc. too...that is why it is difficult to diagnose Lupus.

Good luck on your tests. Don't give up. Better days ahead.

 

[raggedyann1]

Hi Gina,

Sorry that your search for a diagnosis is still ongoing. Take a moment to look at the lupus criteria and symptoms post, it is pinned at the top of this forum. Also I am wondering what tests they are doing for a possible lupus diagnosis. Here is an article that explains the blood tests that are used. These tests can also help diagnose other Connective Tissue Diseases. when you are at your appointment ask the doctor what your results were for each of the tests. That will help you know that they have run all the relevant tests.

http://www.hss.edu/Conditions/Lupus/Labora...-Tests-In-Lupus

Not all your symptoms are lupus symptoms. However many members here also have IBS.
Nerve pain, joint pain and rashes can all be part of lupus. I know that lupus can affect the eyes but do not remember how it affects them. Lupus unfortunately mimics other diseases which is why it can be difficult to get a diagnosis. If your ana test comes back normal or negative it is extremely unlikely that you have lupus. The fact that you are on prednisone at the moment can interfere with a true reading on some of the bloods. Did you have your blood drawn before you were put on prednisone?

Let us know how your appointment goes.

Take care,
Karen

 

[SharonMV]

With the uveitis, you might want to look into Behcet's Disease and Spondylitis (www.spondylitis.org). This is just info I've come across doing my own research - I'm not in the medical field. I hope the doctors can help soon. At least I hope they are helping you deal with your symptoms. Just hang in there. I'm just being diagnosed with Lupus myself, but have been sick for 15 years.

Sharon

 

[kat34]

Gina

I am new to this site and just read your post and I also have Uveitis and I'm very confussed as well.
I have had Dicoid Lupus for about 18 years and have always tested Neg for sle lupus.
A month ago I was DX with Uveitis and sent to a Reummy becase of a 320iu RF and an ANA of 1.40 which is considered insig.
The reummy told me I do not have RA and said 10 % of people test Pos for RA and I have OA.
He called a week later saying I test Pos for the Anti-CCP at 260 It's High.
Now he say's I have some sort of autoamune disease but I don't know what.
The test results are POS for RA BUT BUT BUT Uveitis is not ass with RA.

So now I just wait for more symptoms and It's very confussing. I know how You feel

Kathy

 

[bondingma]

Kathy,


Thanks for your input. I am still confused. I had all the Lupus panels pulled and EVERYTHING came back normal, so I guess this isn't the website for me... They don't know what is going on... I have to go to an autoimmune specialist within the next week or so. It really just plain SUCKS that a person can be so sick and 4 doctors can't figure it out.

Whomever told you that Uevitis isn't associated with Rheumatoid Arthritis is full of it! It is the #2 early detection sign for RA.... Have you had your HLA B27 pulled yet? If not, ask your doc to do this very insightful and needed test if you have uveitis. It is related to tons of different things, but when showing signs of uevitis, it can narrow them all down to RA or Krohn's disease. Speaking of which, you might talk with your PCP if you have an symptoms of Krohn's or colitis. It is the #1 problem with Uevitis.

GOOD LUCK Kathy,
God Bless


Gina

Thank you everyone for such wonderful words. I think we have an answer that it isn't Lupus. I hope whatever it is has a friends board like this one! YOU all are awesome!!!

Take care and Good Luck with everyone in the future

GOD BLESS YOU ALL!

Gina

 

[kat34]

Uveitis is only assc with Juv Reumatiod Arthritis not adult RA. Info from Mass Eye and Ear Uveitis web page.

Kat

 

[bondingma]

QUOTE(kat34 @ May 6 2006, 09:31 AM) [post=409622]Quoted post[/post]

Uveitis is only assc with Juv Reumatiod Arthritis not adult RA. Info from Mass Eye and Ear Uveitis web page.

Kat
[/b][/quote]


Kat,

That is INCORRECT! My mother AND grandmother both have RA and it was detected because of reoccuring Uevitis and Iritis when they were in their late 20's. Trust me, we are a family that has been through the mill when it comes to figuring out exactly what I have at the age of 31 and we know it's not RA, but that was one of the first things they did was pull a RA factor panel. It may not be "common" but it IS a symptom of RA....

 

[kat34]

QUOTE(bondingma @ May 6 2006, 09:53 PM) [post=409678]Quoted post[/post]

QUOTE(kat34 @ May 6 2006, 09:31 AM) [post=409622]Quoted post[/post]

Uveitis is only assc with Juv Reumatiod Arthritis not adult RA. Info from Mass Eye and Ear Uveitis web page.

Kat
[/b][/quote]


Kat,

That is INCORRECT! My mother AND grandmother both have RA and it was detected because of reoccuring Uevitis and Iritis when they were in their late 20's. Trust me, we are a family that has been through the mill when it comes to figuring out exactly what I have at the age of 31 and we know it's not RA, but that was one of the first things they did was pull a RA factor panel. It may not be "common" but it IS a symptom of RA....
[/b][/quote]


Thanks for that info it dose make more sence with all my blood work leaning tword RA. I will make an app at Mass Eye and Ear and see what develops thier.

Hope You find Your answers soon and feel better

Kat

 

[kat34]

Also go to the Mass eye and ear Web page they have a large support group and tons of info on Uvetitis with help in finding a Uveitis specalist in Your location.

Kat

 

[bondingma]

QUOTE(kat34 @ May 6 2006, 08:40 PM) [post=409715]Quoted post[/post]

Also go to the Mass eye and ear Web page they have a large support group and tons of info on Uvetitis with help in finding a Uveitis specalist in Your location.

Kat
[/b][/quote]

Thanks! will look at the web site tonight!

Take care and many prayers for you and yours

Gina

 

[nappy]

Gina, Me too...

Gina, my name is natalie. I have been diagnosed with JRA since I was sixteen which may not really be the case. I am now thirty three my problems were huge rashes in my inner thighs that spread all the way around they were in the cracks of my elbows and the backs of my arms but no butterfly rash... Then the joint pain came in to factor when I was about 19... all the blood tests showed nothing every time. I then found a specialist who gave me an rh factor test that came back neg. I always have protien in my urine and I have had about twelve kidney stones even though I drink plenty of good water. I am loosing my hair in spots and I am so young. I have been tested for everything in the book. I really was sick of getting my blood tested. Kidney xrays and such. I have had drs tell me I dont have RA. I have been told I dont have Lupus. Recently I found a new Dr. she gave me a test which looks for a certain enzyme in my blood. I will have the results back soon. I am hoping it is there and I will finaly know that I have this JRA... It would be nice to find someone else who has the same issues as I do. I am going to figure this out.

 

[Lily]

Hi Natalie and welcome,

The post is dated May 2006 and Gina has not visited since the day after it.

Perhaps you would like to make a post in the Introduce yourself section so that we can get to know you and maybe try and help.

love
Lily