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Posted 2/18/2009 7:37 PM (GMT 0)
Hi there,

I'm 27 and pretty sure I have lupus

First I was diagnosed with autoimmune thyroid, then had patchy hairloss including my eye lashes.  I had pain when breathing and the whites of my eyes would turn red and splotchy. I was tested and also had high ANA.

I moved to london from NZ and now I've had terrible joint pain in my hands feet knees elbows - especially when I wake up in the morning, but xrays are normal.  Recently I've had a really saw clicky jaw.

I also wake up with numb hands occasionally - pins and needles.

I've also got a clicky feeling when I swallow (anyone else ever had this?)

I think I've got lupus but the rhuematologist I have been seeing just keeps doing more tests and won't diagnose. 

I'm terrified to be quite honest - there is a family history of MS and other auto immune disease (arthritis etc).

I feel really alone and scared over here by myself and contemplate moving home. It's reasurring to read your posts and know I'm not on my own!

 

Posted 2/18/2009 8:00 PM (GMT 0)
Welcome Jules! My brother went to NZ a couple of years ago and from the pictures it was soooo beautiful! I've been to London once and it was about this time of year and it was awful! So cold and damp, but it was before I started to get sick so I was able to deal with it. Is it much colder or more damp in NZ? My doctor actually told me at my last visit that if my husband ever gets a job offer out in the desert to seriously consider it. I live in the mountains of NW Georgia and it's so pretty I can't imagine living anywhere else. Just looking out at mountains makes me feel like I'm home, which is funny giving that I grew up in Miami, FL. This is the worst time of year for us with joint problems and I'm just trying to stick it out until spring. hope you're able to find something that gives you some relief soon. Good thoughts and prayers being sent your way.
Posted 2/18/2009 9:54 PM (GMT 0)
It does take a while to get the DX.. but the things you have written, to me does sound like it.. Lupus affects my eyes too...I have never had the clicky feeling when swallowing.... It took almost two years for my DX....
are you taking any meds?
Posted 2/18/2009 10:41 PM (GMT 0)
Jules,

Being so far away from home while not feeling well can be a real scary thing and I appreciate your comment that you feel alone and scared. There are so many things I want to ask you. Weleetka asked a good question - are you taking any meds while in dx limbo? What kind of relationship do you have with your rheumy? Some doctors rush us in and out in a few minutes while others take the time to talk to us and answer questions. I hope you're able to make a list of questions to discuss with your doctor.

I too was frustrated while seeking a diagnosis but eventually learned that even though a doctor may strongly suspect a dx, they are reluctant to give a firm diagnosis because, for example, of the impact that can have on the ability to get insurance, not only health, but life and long term care insurance as well. Autoimmune diseases are difficult to diagnose and doctors are careful about not making mistakes. What is also important is whether or not you're being treated. I hope you are.

Tell us more about yourself, and please use this forum as an outlet for your fears and frustrations. You're in a tough place emotionally. That's what we're here for. While some folks are reluctant to post too much, don't be. We can't help you if you don't post.

I hope you have the opportunity to make friends in London. While I don't think it's a good idea to start talking about health problems when you first meet other people, you can still find comfort in knowing that you have a friendship with someone. While I was in a very bad place with my lupus I started knitting, and then hanging out at a local yarn store. I didn't talk about my lupus and now only when asked, but I find so much comfort and pleasure in having a group of friends I can hang out with. And I come here when I need to vent. And believe me, this is a wonderful place for that. We'll be here for you.

I'm glad you wrote and hope you'll join our little family here. Please let us know how you're doing and again, tell us more about yourself.

Hang in there,

Pat
Posted 2/19/2009 2:43 AM (GMT 0)
Hi Jules, welcome! We're glad you found us! How long have you been seeing your current rheumy? Lupus is hard to dx and doctor's don't hand down a dx like that unless they are 100% sure you have it. Most doctor's run labs mainly to rule out other things, look at your symptoms, do a physical exam looking at your joints, skin, etc and take your family history. Here is a link to the criteria list that most doctor's go by: www.lupus.org/webmodules/webarticlesnet/templates/new_aboutfaq.aspx?articleid=75&zoneid=19 usually if you have 4 of the 11 symptoms doctor's will consider lupus. Also take a look at the post "Lupus Resources", there is a lot of good information there.

The most important thing is not necessarily being diagnosed but being on a good treatment plan, what kind of meds do your doctor's have you on? Keep reading and asking questions, knowledge is power and you know your body better than anyone. If you feel your doctor is not listening to you or taking you serious then move on to another, don't waste time, just move on. Most of us have gone to several doctor's before getting a dx.

I hope you get some answers soon and begin to feel better. Take care and keep us updated on how you are doing.
Posted 2/23/2009 7:48 PM (GMT 0)
Hi, thank you so much for your advice and kind words!

I've only seen the consultant twice for 5 minutes each time. I saw a couple of consultants in NZ, but didn't have joint pain then and they just thought the symptoms were coincidental.

My current one just orders more tests and says come back in 6-8 weeks as nothing is showing up in the ultra sounds/xrays. Since I posted this I've had two rashes - one red splotchy one on my face and chest, and the other a scaley type one on my forehead (and in some places it comes in a perfectly round circle which then goes away). I've also had twitchy jerky type movements in my limbs and a weird dizzy feeling when I close my eyes. I hate it. My grandfather had MS and I don't want to upset my family (who live on the other side of the world) by telling them about my symptoms which adds to being real scared and lonely. I'm going back to the GP this week but know they will not be able to do anything, just don't know what else to do short of going to A&E and saying 'I feel funny' ya know.

I'm not on any treatment at all, it has been months now. My Dr has given me naproxen anti inflam but it doesn't even really work anymore.

J x
Posted 2/23/2009 9:17 PM (GMT 0)
Hi J, Make sure to take pictures of your rashes. Take the pics with you to each doctor appointment. Also, make sure to collect a paper trail of all your lab work and tests. It seems like a pain if the tests are showing up as "normal" . . . but sometimes we are told they are normal and they are actually a bit out of range. Anyway, sometimes it is helpful to track how they change. . . and it will help when you go from doctor to doctor if you take your record folder with you. Have you seen a rheumatologist?? That would be the lupus specialist who could actually diagnose you. Hang in there. It can take a really long time to get the attention of some of these doctors. Blessings!
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