Hi I'm Melissa
Hi my name is Melissa I live in Michigan and am 27 and I have been begging people to listen to me for 12 years but instead they would give me pain meds and label me a crazy druggie! It all started at 15 when my Jaw locked for no reason for 6 months no one could say why and they said it was in my head and I was crazy! Well at 22 after many trips to the dr and er begging that they help and find out what is wrong they finely did a x ray that shows I have TMJ and DJD in my Jaw (DJD in all joints). I then had such a hard time getting my doctor to look or listen to anything I have been through 10 so far. I have a horrible reaction to the sun I get very very bad scarring rashes and sores well I went to my dr for something else and asked her to just look at it because it had just come up and she told me she didn't have time so after suffering for 2 days I went to the med center and they had to put me on steroids and told me I should have had this token care of right away. I was also ignored and had to go to er to get diagnosed with diverticulitis! I have had migraines my whole life I thought moderate back pain was normal because every one seems to have it I just thought every one walked through life with crounch pain. I decided to try one more doctor after My knees started getting red and hot to the touch and my hair started falling out. I brought all the info and was ready to plead my case but before I could even say the word Lupus she told me she thinks that is what I have. Thank god some one believes me!
Red Hot swollen inflamed joints
Tired all the time
hair falling out
rash from sun
sores in mouth and nose
tightness in chest
numb fingers and toes
tremors in legs arms and full body at times
That is all I can think of now.
Last edited by Melissa_Loss; 04-25-2010 at 09:29 PM.
Welcome to WHL. I'm Rob, and I was diagnosed with SLE in 2004. Sounds like you've had the typical runaround from less than competent medical "professionals". It's unfortunately, a fairly common thing. The important thing is, you now have someone who can make a proper diagnosis who will listen, and agrees with your own idea that you Have Lupus. I'm no Doctor, but I have, or have had 14 of the 17 symptoms/conditions on your list-it sure sounds like Lupus to me. Have you recieved an official diagnosis yet? If not, keep your focus, and work with this Dr./Rheumotologist. It's important that if you do have Lupus, that you get started on some form of treatment ASAP. I have personally had good results from Plaquenil. I probably don't have to tell you, stay out of the sun! Get yourself some good quality high SPF sunblock, a wide brimmed hat, and a lightweight/light colored long sleeve shirt. Stick to shade and cover up, even if it isn't Lupus, you obviously are having a severe reaction to UV rays, and should cover up.
The good news is, Lupus can be managed and controlled. I've had active SLE for at least 6 years officially, and although I'm no longer able to work, I still have a fairly active, and very fulfilling life. There are, and were some tough times and challenges to be sure, but nothing I, or others like yourself, can't handle. Once again, welcome to our group, and please make yourself at home.
PS-Lately, I've been having terrible TMJ problems too. I got one of those mouthguard mouthpieces and it really helps.
Last edited by rob; 04-25-2010 at 05:55 AM.
I have not been official diagnosed yet She said she is 99% that it is lupus we just need the blood test back before she can say for sure and I will get those Monday. I know to well to stay out of the sun! I have been living with the sun sensitivity for most of my life so I always use sun block on face and hands and cover everything else up. I have started meds for my skin and joints because when she say me they were so so bad both knees were red hot and swollen when I went in which I was happy about (lol) because I have had some one tell me it was heat rash when I showed them a picture! I also have horrible swollen glands for years that drive me nuts! I have suspected Lupus for about two years but no one would listen. My Tmj is to the point of surgery I have tried every thing and I mean every thing else they have out there and nothing worked.
There are so many doctors who give you the runaround because they do not know what they are doing. I am glad that someone finally listened to you. As Rob said we are all here for each other. Bonita
Welcome to WHL. Many of us have dealt with docs like the one you had. We found out that the PCP that I used to have was in a group that had a sweetheart deal with the insurance co. The doctors group kept more of the insurance money if they didn't send patients out to specialists, so she kept insisting on dealing with everything herself. I'm convinced that she delayed my diagnosis for a long time. Like you, I finally went doc shopping and found a good one.
Keep working with the good doc that you've found, and keep coming back here to chat, ask questions and learn. We all understand what you're going through.
Well ANA Pos 1:320 and Plates are low:120 so I guess that says it. She put me on plachel(sp) and I am going to see the Ruem soon.
Welcome to WHL. I am glad to hear you found a doc who is listening to you and your body. Congrats on that! I was reading your symptoms and was wondering, what is djd?
As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.