View Full Version : Just got the news!

04-03-2012, 01:37 PM
Hello all,

I am 25 years old and I just found out yesterday that I have a primary diagnosis of Lupus. This is all pretty shocking to me because there is no family history of autoimmune disorders in my family and up until recently I thought that I was very healthy.

This past winter (only about 4 months ago) I noticed a small bump on the tip of my big toe. I wasn't concerned and didn't pay it much mind until the mark continued to grow and become very painful. I eventually went to a podiatrist and had the lesion biopsied. The lesion came back as being Pernio (chilblains). I have had Raynaud's for a very long time. I have showed my feet and hands to numerous doctors and no one ever expressed any concern. No one EVER warned me that I may be susceptible to sores and lesions or that the Raynaud's could possibly be secondary to an autoimmune disease.

I decided that having a lesion from Raynaud's is not the norm and that because of this it must be more severe than I thought it was. So, I was proactive and I decided to go to a new PCP. As soon as my new doctor saw how horrible my Raynaud's she started me on Amlodipine and sent me for blood work immediately following the appointment. I found out 3 days later that my ANA was positive and she recommended that I follow-up with a Rheumatologist (this was all about 3 weeks ago).

At my first appointment with my Rheumatologist he explained to me that I needed more thorough blood work done and that at this time I didn't meet any specific criteria, so I left with a diagnosis of Undifferentiated Connective Tissue Disease (UCTD). Well, I went back yesterday and I would now like the UCTD diagnosis back! haa

My ANA titre is very low (only 1:40), however my DS-DNA is very high. My platelet count is also very low. I left my appointment yesterday meeting more than the 4 necessary criteria for Lupus and now I don't know what to do with myself!

I started Plaquenil today. I know that it is going to be a slow process until I begin to notice any changes. The most difficult aspect of all of this is that I feel unprepared. I never thought that I would be affected by something like this and now that I look back, I have been dealing with this for so long. So I am struggling between being angry, feeling sorry for myself, and also feeling validated.

Although I have very supportive friends and family, I have found it very difficult to articulate to my closest friends and boyfriend what this means for me. I don't think they really understand how serious this diagnosis can be and the changes it may have on my life. For those of you that have dealt with similar circumstances, what is the best way to approach this? How can I educate my friends and boyfriend so that I get the support that I need?

Marine wife
04-03-2012, 02:04 PM
Welcome! Me finding out I had Lupus is a lot like yours. In early December I started having joint pain and went to my doctor who said it was more than likely RA or Lupus. Went for blood work and my ana was positive. Went to the rheumy and had more blood work done. Everything said Lupus and I was diagnosed early March. It all happened so fast that you don't even have time to learn about it yourself a lot less explain it to other people. I found the Lupus Foundation website to be very helpful. My husband had read it too so he would understand. This forum is wonderful too! You can get a lot of answers to question. Good luck!

04-03-2012, 03:35 PM
Thats basically how I found out. I was getting ulcers from my raynauds so my GP sent me to see a rheum and she suspected lupus from the blood work and officially dx'd me a few months later. Its a lot to take in but today lupus is really treatable. Those were the first medications I started taking and had I stayed on them like I was supposed to I bet they could be the only meds I would be on now lol I would look around on this forum and see that lupus isn't always as bad and scary as the internet can make it seem. If its treated right and you do your best to stay healthy you can still live a pretty normal life. Make sure to keep regular appointments with your rheum if you can and ALWAYS make sure to take your medications. Plaquenil takes awhile to work for most people but normally is built up enough in your system after about 3-5 months to start working all the way. I'm pretty sure the Amlodipine is the generic for Norvasc which is what I was on up until a month or so ago for my raynauds. It helped me a great deal for about a year and a half by itself before I added a Nitro patch as well.

As for your family and friends I would simply explain it to them the best you can right now. Tell them that you have this disease where your body attacks you the same way it does a virus. Tell them there may be days where you are just too tired to go out and do things but that there will be days where you can. If you haven't seen it already a great thing to show family is the spoon theory. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf I also read a great story not long ago written by someone on a lupus group on facebook called the rope theory http://www.facebook.com/note.php?note_id=359505247413827 I am not sure if that link to it will work. I hope that you will stick around with us =)

04-03-2012, 09:08 PM
Hi and welcome to WHL! I am sorry this post is going to be short but I am on my phone but I will write more from the computer.

I am very sorry that no ones explained to you that Raymauds is actually an AI disease itself. It may have helped them figure this out a bit more quickly if they snapped that you already had one! Sadly this is not uncommon. Too many Drs don't understand Lupus and AI diseases. There are actually 63 AI diseases ( we have a list in one of the sections as a "sticky" at the top of the page") and it is very common for people to have more than one. We call them "overlapping diseases" and it looks like that is whT youse be dealing with.

Once agai. I do want to welcome you to our WHL family. We are glad that you found us

04-03-2012, 09:50 PM
hi and welcome to your new cyber family.

one of the best things about this group of people ...............
is they care!!!!!!
and they understand.

i am proud to be part of this group.
i have received a lot of support, and i am very happy to share.

the spoon theory, that ritzbit2 has offered the link to is very good.
another link you may appreciate is http://forum.wehavelupus.com/showthr...=Letter+normal (http://forum.wehavelupus.com/showthread.php?11500-How-do-I-help-him-understand&highlight=Letter+normal)

again, welcome.

04-04-2012, 05:47 AM
Thank you all so much. I feel so lucky to have such a great outlet of support.

I hope you all have a wonderful day! :)

running girl
04-04-2012, 10:00 AM
Hello and welcome,

We understand. There are so many fantastic people here who care. Read through some of the threads and make yourself at home.

When my doctor first mentioned lupus (not diagnosed yet, but am being treated for) I didn't know what to do. It was the number one thing on my mind for many months. I read a lot. I feel that knowledge is power. There is a lot of information on the web, but be sure to look for credible sources. Make sure you ask lots of questions when you see your doctor. Tell your loved ones that you are scared. They are welcome here too. Take care of yourself. Drop by the forum often.

I'm looking forward to getting to know you.


04-04-2012, 12:46 PM
Well, I wish I had a Lupus diagnosis or something. I had a positive ANA of 640 so my primary sent me to a Rheumy (3/26) who did a complete work up. But he did say he did not think I had lupus. I have bad case of arthritis throughout my body and abnormal amount of inflammation throughout my body, but no diagnosis as of yet. I know I had arthritis but it would not account for my severe sun sensitivity, my fatigue, being exhausted most days, and the skin ulcers and rashes I get continuously.

I have only had one appt with the rheumy and go back in mid-may but I wish I had a diagnosis so that I can start some form of treatment to begin feeling better. :(

Feel so alone right now.

04-04-2012, 01:24 PM
Hi and welcome to WHL. You have already received some great advice and resources to learn from. You are very lucky that you seem to have found a pro-active PCP and rheumy and that they are getting you started on treatment very quickly. Learn all that you can, and be sure to join in on conversations here and ask any questions that you might have. There is usually someone hanging around here with an opinion.

04-05-2012, 02:10 PM
Hello Lword,

Welcome to WHL.

Please make yourself at home.


04-06-2012, 06:37 PM
welcome to whl family we are here to help you all we can hugs kim