Ok, I am a newbie and I'm not even sure if I'm in the right spot..... :wave:

About three years ago I developed this rash accross my face cheeks/nose..... at the same time I also had a patchy rash accross my abd. My ears were bright red and hot to the touch. I in general felt a little under the weather, nothing major, no big fever (not over 100.) I had some diffuse abd pain, but like I said nothing extreem..... I went to the doc and he did a mono spot and a CBC. My mono spot came back positive and the CBC showed a high lymphocyte/WBC count (one of those things, not sure which) He said the abd pain was from the enlarged spleen that mono causes. I went home and waited for this severe sore throat to develope, for me to become fatigued, run a high fever, feel, you know, SICK! It never happened, my throat wasn't the slightest bit sore, no swollen lymph nodes and although I felt a little under the weather, I still didn't feel ill enough to lay around in bed.

I mentioned this to my doctor and he told me some people carry around infectious mono in their saliva without being infected with the disease themselves.

Fast forward to the present time, I went to my doctor for joint pain and he did an XRAY and and ANA, and the ANA came up positive. He called me and told me I had to go see a rhuematologist. He told me that lupus and rheumatoid arthritis were both possibilities, OF COURSE I ran home and looked up both disorderes on the internet.....

Every lupus page mentioned mono.......

Is there a connection between mono and lupus?

Does having the carrier form of mono make you have a positive ANA in abscence of an actual disorder?

What about the rash, how long does it usually last, does it reaccur, at what frequency does it reaccur and how long does it take to go away???

Thank you so much for this you guys, my doc's office is just not forthcomming with info and I really feel like I need some info and need someone to talk to!

Hi, it's Vee again. I just posted to you under Going to the Beach thread. Just want to add

(1) Read the "sticky posts" at the front of the Board, on lupus diagnostic criteria & tests, and on antiphospholipid syndrome. The "4 of 11" criteria are so bizarre that I don't think many drs. understand them! Key points: they apply to SLE (not to the subsets like SCLE, DLE, etc.); and they apply across your LIFETIME, so you should think of a criterion being checked off in ink.

(2) Two excellent hardcovers on lupus are one by Dr. Daniel Wallace & another by Dr. Robert Lahita. Most libraries & bookstores will have one or both.

Vee

I have not been to the rheumatologist yet (I was told Lupus is not an emergency and I'd have to wait my two months for the appointment) I am just trying to do some research, I looked it up on the internet when my ANA came back positive and I have some of the diagnosising criteria, I'm not sure about other things such as anemia, because I don't have a CBC right now......

But like I said the thing that alarmed me the most was the mono thing....

It's so disheartening when I discuss lupus with my freinds they say things like "I thought that wasn't a real disease, I thought it was something hypochodriacts make up" or "Most people that have lupus are drug seekers" Just the miss-education of the general public concerns me. I feel like I'm being ousted already!

Hello iluv,

Firstly pleased to meet you, but obviously not under these cirumstances. Now to speak of what you said. Wow, these people call themselves friends of yours? I feel so bad for you that you have such a difficult road to go along and are doing the best you can by getting educated and getting a firm diagnosis, and you have these people who speak of lupus like this. How dare they.

When I read this, I didn't know how to react. Anger, disbelief, pity for these people or what. Then yes, I got angry and all of the comments rolled into one and I saw red. I have had SLE for over 30 years, and I have fought to educate people and to explain about the affect of lupus and what can and does and might happen because of it. Hypochondriacs? Drug seekers? I think not. Who in their right mind wants to take drugs for such an illness? What doctor would study to specialise in an illness that doesn't even exist - according to your friends anyway. Who would prescribe drugs for lupus if they didn't think you had it? If we needed the kick of drugs, I am certain we would get them from wherever we could other than the appropriate channels.

We really need to educate people like these who to my mind are so rude and ignorant. I was so amazed that this came from the mouths of "friends". With friends like these, who needs enemies? They do not live in our bodies, if they did they would soon change their minds. They really need educating, and they need it fast. On the other hand, if it were me I am afraid they would not be in my circle any more until they were prepared to listen and be willing to read about lupus. If they are making comments like this without even having any of the facts, then I am sorry I would rather not have them as friends. If you are to get support when you need it and understanding when you are unwell, where is it going to come from? Not these persons I'm sure. .

Your friends I am afraid would not last two minutes with me. I still cannot believe that they speak of lupus and those of us who have it like this. Wow !! Take no notice at all of this type of person. Sorry, I had to vent. It was just such a surprise to know that this was the way some people still thought. I know education is still needed, but to speak to you and about lupus in this way is something I find hard to get to grips with. Have they ever read any information about lupus? On what do they base their comments? Please iluv, take no notice of them at all.

You will have all of the care and support you need here, and any questions you need to ask will be dealt with in a gentle and understanding way. You know how you feel and it is important that you do not even think of comments such as have been made. We are all here to support you and help all we can. I am just so sorry that this negativity has been shown to you and to lupus.

Please take care and come back soon.

goldenwings :angel:

Just saying welcome Iluvkaylee. I couldn't say it better than golden. We cannot worry about what other people think, we need to worry about getting the right diagnosis and treatment. I have actually learned to pity people who are that narrow minded and cannot expand their brain enough to ask and learn about something they know nothing about. I usually just shake my head and walk away or if I think they have the capacity I try to educate them. Nice to have you on the board.

Hi all hey kaylee she is right your friends are suppost to be there for ya not against you my husband had lupus which he did not survive from it he also had sle and i learnt alot of things by watching him suffer from it he went through a whole lot of pain you defanly need to find somone who is gonna be there for you all the time not judge you they say lupus can drive you insane well hell the people who are suppost to help you and some docs do all that i can see why now they say it drives you insane we had to wise up and take action ourselves but it was to late by the time we did so dont listen to these people you make sure you dont feel like you are the wrong one because your not lupus is a very serious dease i never even heard of it untill my hubby got told he had it and boy where we shocked to read about it well you just hang in there and keep talking here these people will help you through thick or thin :angel: