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stephlovespeter_xo
02-21-2009, 03:32 PM
I am going completely crazy! I feel like doctors are diagnosing me with all of these disorders but none of it makes sense. My gynecologist has some suspicion that i might be experiencing all of this due to lupus. Just within the last year or so my joints have gotten SO bad. There are days where I cant even fully straighten my fingers. One night, I woke up and my joints in my wrist were so bad and inflamed that it felt as if it were broken - i could not move my wrist. I have high blood pressure, at 20 years old.. I am also vitamin D deficient and b12 deficient. Whenever I try to take a bath, my joints go completely red - my fingers and knees are the worst after a bath. I didn't think that any of this meant anything until I started doing some reading on the internet. I also have really poor circulation - my feet are ALWAYS cold.. My back gets really bad also, i have to continuously crack my back, neck, fingers, and elbows because if i don't they feel so inflamed. Here is where i run into a problem, I had my ANA tested and it came back negative. My doctors have not tested any other blood work. What do you all think? Do i have classic lupus symptoms? Oh, and just recently.. I have noticed a very faint rash over my cheeks and the bridge of my nose. It is very faint, but you can definitely see it and so can others. What is going on in my body?!

Steph

iseedeadmonkeys
02-21-2009, 04:36 PM
Intresting Steph,

Welcome to the forum btw, i think you will find alot of useful information on this site, check out the stickys for criteria on lupus, sounds like you need answers to me, sometimes ana come back neg and pos all over the show really, its changes all the time, do you have a consultant or are you going via your gp at the moment?

Sorry about your discomfort we all go through it some more than others but we all know how annoying and painful day to day life can be,

ISDM
xx

Angel Oliver
02-21-2009, 04:44 PM
Just to say hello and you have come to the rite site for answers.Have a look around the forum and also people will post here to help you with questions. Im sorry im not that knowledgeable.....but someone will be along very soon. I must say though, i too had a negative result and have recently been told i have M.E that was after they said i had Lupus.I do think its right, you can have negative results and still have Lupus. Yes, i too have joint pain and muscle pain. You are NOT crazy though. You hang in there.....we will help you along. Sending you gentle hugs.

love
Angel.xx

sick n tired
02-21-2009, 04:52 PM
Hey steph,'
My blood work never does what it is supposed to...for instance I will have a few markers saying my liver is having trouble and others saying it is fine,...this will all be in the same reading. Or I will biopsy for having a secondary disease but the sed rate is in normal range. You could have lupus, It is just hard to get a diagnosis. Hopefully you will find a doc who will treat the pain and symptoms even if you don't have enough criterion to be totally dx'd

Heather3188
02-22-2009, 12:20 AM
I feel you, I've had the lupus panel done and it was negative but they still think I could have it. I'm going to the rheumatologist Monday and I'm hoping he will have some more answers. I've had this horrible rash since the beginning of December and they can't figure out what is causing it.. and then I'm having

Headaches
Stomach aches
lots of joint pain
feeling tired all the time
sometimes brain fog
and random mouth sores (usually on my tongue)

I just havent felt myself for a while.. not to mention my back pain and pain near my kidneys. Ugh, hopefully we both figure out what is wrong with us I'm only 22 so we are both young.

tishka
02-22-2009, 08:43 PM
Hello Steph
Glad you found this site...I too just found it and the people are great.
You need to keep getting info and learn as much as you can...it helps with dealing with any disease. I to have had my blood work go up and down...sometimes in and out too! Ha ha ha...but with that you should keep going back and let the doc know what your symptoms are. Dont give them an inch ok!
Tishka

Rastagirl
02-22-2009, 09:24 PM
Hi Steph....

Just wanted to welcome you to the forum. Glad you decided to join us. I'm so sorry you're having so much pain and suffering. And at such a young age. I was diagnosed when I was 18, and I remember feeling very scared and confused. Sending some gentle hugs your way....

You've found the right place to learn and get your questions answered. There's a lot of great information in the 'Stickeys' posted in some of the forums. You should check them out.

Sorry you're going through the sometimes frustrating diagnosis process. I wish it was an easier process to navigate. Hang in there....and check in with others on this site to ask your questions and educate yourself. You'll find lots of support and understanding from everyone.

I hope tomorrow will bring a better day for you....

Fondly,

Lori :)

mountaindreamer
02-22-2009, 10:03 PM
hi steph...
I see where several members have already welcomed you to the forum, let me add my hellos to the group.

Do you have a rheumatologist. Your symptoms certainly sound like lupus, but a "good" rheumy can give you some more definite answers. Also, blook work comes back with different results based on the lab, and whether or not you are in a flare.

If you don't have a rheumy, ask your gynocologist or your primary care dr. to refer you to one. If the dr. calls, maybe you can get in quickly. I know this is a frustrating time, and I hope you find some answers very soon.

KathyW1958
02-23-2009, 08:37 AM
Hi Steph,
Welcome to the site. I read through your post. You have to have at least four of the criteria listed by the Lupus foundation of America to get diagnosed most of the time. Lupus is a very hard disease to diagnose since it mimicks so many other diseases. The doctor should have tested your esr and cbe and complements and not just the ana. What is sad is a lot of doctors are very hesitent to diagnose Lupus without the positive ANA and that is not right, but it is the way that it is. You have to see a really good Rheumatologist.

You said that you are B12 deficient. I am wondering if you are taking B12 shots once a month? That sounds like you have Pernicious Anemia a long with your other problems.

I just want to welcome you to the site. I hope that you keep posting.

Hugs,
Kathy