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idunno
08-18-2009, 11:40 AM
Hi. I'm new here, so I'll tell a bit about myself.

I have been having weird symptoms for about 15 years, since I was in my mid teens, but the symptoms have always been mild, go just as quickly as they come, and are usually barely more than a nuisance. What I deal with is painful and slightly swollen knees that flare up a few times per year for just a few days; occasional bouts of pleurasy, and a small skin rash that sticks around about 75% of the year. I got the first rash when I was 15 and it covered my entire legs for months. I was told it was exzema so I have always treated it as such. But then my legs cleared up and ever since it has always come back very small (quarter size) on either my face, arms, or hands. It sticks around one spot for several years at a time, and goes through periods of clearing up and flaring back up. After it has stayed in one spot for a few years, it'll move to a comepletely different spot, and start over. It basically starts out as tiny red bumps, then gets red, itchy, inflamed, and oozie if I scratch it. Then, as it clears up, it'll get very thick and scaly. Eeeewwwww! I know :) But at least it's tiny, huh?

I have never sought treatment as I just never felt the need to, but then a few months ago, my knees came back with a vengence, stayed painful for 6 weeks, and even spread to my ankles. I also discovered that I was running a low grade fever everyday for weeks. (just started nursing school and we were practicing physical assessments) There have been a few other issues like high lymphocyte counts at my physical, sciatica that comes and goes, and one time in high school the bottom of my feet felt like they were hit by basball bats for a few days, with no explanation or bruising. So, at the request of my nursing instructor, I went to see a rheumatologist.

Well, that was a horrible experience!!!! He started to shut me down the moment I opened my mouth, and basically told me all my complaints were normal and nothing to be concerned about, and I'm just being over cautious since I'm in nursing school.

I ended up telling him that I knew I was perfectly healthy, didn't need any medication whatsoever, and was not diagnosis seeking. My only concern is that if I do actually have a very mild auto-immune condition, I merely want to know about it incase it ever gets stronger. (He still didn't seem to care)

Well, I just called for my blood results, and the lab guy told me I have a just barely positive Anti-dsDNA titer, and that is what they use to screen for lupus. Interestingely enough, my doctor has not called to speak to me aobut it.

What do ya'll think...should I go see another rheumatologist? Like I said, I feel perfectly healthy and don't want or need to get on any medication...I just want to be aware of what is going on in my body. My last flare up got pretty bad, so I'm concerned about my usually mild symptoms getting more bothersome and still not having any answers. Sorry this is so long, and hello to all!!!

leaann
08-18-2009, 11:56 AM
I dunno,
Welcome to our group... First of all run and run fast from that dr and go get another one, sometimes it takes several dr before you find one that cares enough to listen to you... it took me most of my life to get a dr that give me answers and one that showed that she cared...

I can understand that you wnat to know in case it gets worse. you should know it's your body and you need to know what's going on... don't let them make you think you are crazy because you are not... You know what is going on and only you know how your body is...

keep searching for answers and keep a journal of the problems that will help...

Hope you find the answers you are looking for...

mountaindreamer
08-18-2009, 12:55 PM
hi idunno,

first, welcome to our little family....you have come to the place where knowledge and compassion are pevalent.

i agree with leeann....run, don't walk to a new rheumatologist. Even if your symptoms are mild, you might get 100% relief from plaquenil, and will never (hopefully) have another flare.

also, you should see a dermatologist....they can do a skin biopsy and test for discoid lupus....the dr. can then help you with the skin issues.

do not ever let anyone convince you to question yourself or what is happening to your body....this is the easy way out that many drs. try to take....it is a crime.

i am glad you are here, i know you will find everyone very supportive, informative, and many times quite funny.

ButterflyRN
08-18-2009, 02:03 PM
Hi Idunno,

Welcome to our group! You will find so much support here!

I agree with LeAnn and Phyllis! Go get a new rheumatologist! We have all found that you may need to see a few before they get it right! I think some of them were dropped on their heads at birth and don't have the smarts to treat some of us!

There is a chance that you don't need medication for your disease at this point but I would definately get as much information especially a diagnosis to help you out. There are some things out there that have minor side effects such as plaquinel that was mentioned to you that could really help your symptoms out. While anti-inflammatories such as advil help with our discomfort they are not really good for us especially those of us that have the systemic lupus. Advil is processed through the kidneys and can really weaken them and then with flares the lupus monster likes to attack them sometimes! I also agree with getting to a dermatologist that can take biopsies if they haven't already.

Keep us posted and I hope you find answers soon! :yes:

Angel Oliver
08-18-2009, 02:06 PM
Hello n welcome and yes i too agree get a new doctor.Hope you soon get the help you need.

Love
Amanda.xxxxx

dsunshine
08-18-2009, 02:16 PM
Welcome IDUNNO
Love the name by the way!
Sorry to hear you have had symptons for so long and no name to attached. YES see and seek out another doctor until you get/receive the service and care you need and deserve. I think most of the time when doctors try to talk you out of what you feel or endure it's because they don't want to take the time to do the necessary test and or treatments because in the long run they are not fully reimbursed from insurance etc. which is unethicaly amongst other names I can think of.
You deserve relief and compassion!
You have come to the right place to find and receive friendship, love, understanding and support!
Welcome again!

Saysusie
08-19-2009, 10:11 AM
Hi IDUNNO:
Just wanted to pop in to add my welcome to those you've already received. Also, I concur with what everyone else has said..find a new rheumatologist as soon as you can. If you do have an auto-immune issue, it is good to know about it now so that you can take precautions (or maybe even medication) to hopefully prevent it from developing any further than it has.
It is not uncommon for mild AI diseases, left untreated, to develop into more serious conditions. So, drop-kick that uncaring rheumy as soon as you can and find one who agrees that it is best to take care of this now in order to prevent it from becoming something more serious.
Welcome to our family....we are so glad that you are here!

Peace and Blessings
Namaste
Saysusie

idunno
08-20-2009, 09:16 AM
Thanks for the encouraging words, all! I currently am not having any flare ups so I think that I have decided to wait till another one comes back and then maybe see another rheumatologist and ask to have my anti-ds DNA antibodies checked again. When my rash comes back, maybe I'll go ask for a biopsy scrape to see if we can get any answers too. I figured it'd be pointless to pursue now that I have no symptoms. Maybe when my knees swell and my rash is visible, a doctor will take me more seriously!

ButterflyRN
08-20-2009, 12:04 PM
Even though you are not in a current flare I would recommend you find a new rheum to get established. That way when you do have a flare he/she will have a baseline of when you feel okay vs when you are in a flare. That's just a recommendation! I wouldn't wait until you are in a flare and then you might not be able to get an appointment right away! Just a thought! :yes:

bunnie
08-21-2009, 08:30 AM
Hello Idunno!
I am new to this whole thing too. I just this week had a skin bx on my lesions, and awaiting the results.. My derm thinks it is discoid lupus rash, but I may have SLE, too. My recommendation: Go see the rheumy or derm now, get that long, history taking appt out of the way. That way when you have another flare up or lesion show up, you can get in immediately to have it evaluated.. Otherwise, you could have a flare and call to get an appt, have to wait weeks to see the doc, and then your flare is over! That happened to me and it's more of a waste of time that way than to see one now and be an established patient!
Good luck and God bless,
Let us know how you're doing and what you decide,
Deb