TO DEANNA / I KNOW I HAVE LUPUS

[Guest guest]

Hi Deanna,

I know that you can have a negative ANA and still have Lupus......And I did NOT take this Doctor's words about not protecting myself from the U.V. rays too seriously. I know that my Lupus is not active and hasn't been in some time......I have had the butterfly rash only once , right after being diagnosed.......I have suspected for some time that I might have Fibromyalgia, and Sjogren's syndrome from reading about the symptoms on 's website, and from reading posts from all the other Lupies.

I just know I hurt like Hell, and can't sleep and am tired all the time.

I was just Surprised to hear him say the words "remission" .....I had never heard that term used in a Lupus Patient......and I am not going to throw all caution to the wind and go lay on the beach in the sun..........I just won't be so diligent about covering myself from head to toe.just to walk to the car..........and I'm NOT giving up my hats!!....My hair is way to thin......!!

Oh, Deanna.....where do I send pictures to for the albums.....I would like to do mine all over starting from scratch ......My little Isabella took up most of my album cause they were the only pictures I had .......plus some that had been sent to me .....I now have a scanner and some new pictures from Mothers day.

How are YOU feeling? I have been so out of pocket the last week or so.....with my daughter having surgery and now her husband has Bell's Palsy. I had my granddaughter with me for a few days. I have been just deleting a lot of mail......trying to skim through and catch the ones I might have something worth putting my two cents worth in .

I know you and Mike had an annaversary lately.....Congratulations !!

How is your knee......has it crumbled enough for them to do a knee replacement yet?

Thanks for writing, and thanks for this group.......

C.

Re: I'M CURED......I DON'T HAVE LUPUS ANYMORE !!

Hi sweetie, that is great news that your lupus is in "remission" but..... I hate to be the one to say this but I just spoke with my rhuemy and read him your letter and he agree's with me. Remission does not mean it is cured - all it means is that it is "not active"My rhuemy questions yours because of the mere fact that he did not examine you let alone run lab work of his own. Had my rhuemy gone by my previous lab work and notes from other doctors heck he would have said I don't have lupus either. The thing is I had never had a positive ANA and it wasn't until just late last year that I finally did have a positive one. As for whether or not you want to avoid the sun or go out and play in it - well that is your choice but even people without lupus should be very careful with the UV sunrays. I have lupus but I don't have the photosensitivity to it nor have I gotten the butterfly rash.All I can say hon, is enjoy being in remission - that is wonderful news. Your lupus may never come out of remission but it may down the road and if you ever have symptoms get them checked.I feel for you with the fibro and Sjogren's I suffer from those too and its the pits. Take care hon and keep us informed on how your doing. Much love and go celebrate...Deanna> Blank> Greetings My Fellow Lupies,> > I just got back from my first visit with my new Rheumatologist.......and guess what.....> > "I DON'T HAVE LUPUS !!" He didn't examine me or do any lab work .....he just read my Medical files from my other doctors. Now my Nephrologist and my PCP have both told me that all the markers for Lupus were negative which meant that my Lupus was not active.....But THIS doctor said that I am in `REMISSION'....which means that I don't have Lupus anymore.....and probably won't have a recurrance again!> > He told me that I have Fibromyalgia, and Sjogren's Syndrom.......MY MOUTH IS STILL HANGING OPEN!.......> > He also said that I don't need to avoid the sun or U.V. rays.....since I don't have Lupus .....He also said that most Lupus Patients don't have Photosensitivity anyway ! .....MOUTH GETTING WIDER......He asked me if I get a rash or flu-like symtoms or fever when I am in the sun......I said I don't test it .....since I was diagnosed with Lupus ....and was told not to go in the sun without sunscreen and a hat and long sleeves....that's what I do.> > He said he doesn't restrict his Lupus patient from going in the sun unless they have ......something..... I can't remember what he called it that indicates photosensitivity..........He took my blood pressure....which was 150/70......listened to my chest.......pressed on my left ankle and said the slight edema was caused by Norvasc, my blood pressure medication.......He told me to keep seeing my Nephrologist, but my kidney involvment was caused by high blood pressure not Lupus.....Cause I don't have Lupus !> > He lowered my dose of Prednisone to 71/2 mg. a day, told me to keep taking all my other meds as usual, and come back in 3 Months........I'm not surprised that he told me that I have Fibromyalgia and Sjogren's Syndrome.......But I don't have Lupus Anymore???> > Have I found anotherOr am I a miracle????"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies