OMG!! Its official - seronegative lupus!!

laurid8967

Hello my friends -
I started a new post to tell you all of my visit with the new reumie because I thought the subject line may help others who may not otherwise look.
OK - went to see new (old) rheumie. Well, he remembered me (which I thought was pretty good considering its been a year and a half. He was SOOO NICE (OMG - I cant stop smililng). Anyway, he asked whats been going on since, so I told him everything (nutshell: was great that following summer, got lung infection and pleurisy - steroids helped, then worse when tapered off, sick again yadda yadda.) Told him that its pretty funny Im there again today, because I feel pretty good after being put on Pred and plaquenil. He said, "Oh, she (GP) put u on Plaquenil - thats great. Im sitting here listening to you saying to myself, 'OK - I hope someone knew to put her on plaq.' So he asked questions, listened put everyting into his little computer, and I said (played dumb) "Is there anything that could be going on that could do this and not show up in blood work?" and he said "There is a very rare condition in which a patient has many of the symptoms of lupus, the same type of disease progression that does not show the antibodies in the blood work. Its called seronegative lupus. It is pretty rare.. (Im thinking..uugh here we go...) He says, "You appear to be a classic case of this condition." OMG!! Did a rheumie really say it?? Only you folks can understand actually being happy at having been diagnosed with a life-altering disease. He said, "Now, we can monitor your disease progression, and chances are, your blood work will eventually show up. But it doesnt really matter. We are going to monitor the disease progression and treat you as needed." OK...trying not to cry...I said, "Umm ...OK..great.." my head nodding up and down like a yoyo.

He then (because I have a history already of some bone damage due to the steroids given when I was in respitory disress) sent me striahgt to a bone density test, doubled my plaquenil dose and sent me for a whole host of blood tests. Just to make sure, I said,"Well, its probably going to be normal" He said, "Not all of your blood work is normal. But either way, its a baseline to start with. I want to see you back here next month and we'll see about decreasing you prednisone. Hopefully, the plaquenil will have really kicked in by then, and we dont want you on anymore prednisone than you have to take. I dont want to decrease it yet, because I think you'll start to flare again. Lets give it another month"
Guys - this is almost 10 years in the making. Like I said, anyone else not familiar with this Dx process would think I was crazy right now. But you all get it. My husband almost burst into tears...my mother too. Thank you God. I feel like I won the lottery!
Anyone out there - PLEASE ...DONT GIVE UP!! If someone had told me this would have happened a couple years ago, I would have said you were crazy. I had convinced myself I would be a mystery, and miserable, the rest of my life. Yes, I am sick - I will always be sick. But now, I am at least being treated and BELIEVED. I am so grateful. And so grateful to all of you. Im not sure I would have even kept the appt if I had not been listening to all of you these past few weeks. You helped me hang in there - to find out what was going on....I will be forever grateful to all of you.....
Love and gratitude and prayers -
Lauri
I will forever have extra prayers for those still unDx and untreated - please hang in there.
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

Jennyfoo · Posted: Thu Jun 26, 2008 8:46 pm Post subject:

Wow! Just wow!

Can I have your Dr. please?

I am so happy that you finally got the diagnosis and have a Dr. who will liten to you and believe you. I can only hope that I will be in your situation soon.

laurid8967 · Posted: Thu Jun 26, 2008 9:02 pm Post subject:

Jennyfoo,
Gosh I feel almost guilty after what you were put through last week...Please know that I MEAN it when I say that you, and the TOO many like you, are in my prayers....
No one should have to live in limbo like I did - for almost TEN YEARS!!! And thats with really good insurance and full access to doctors!!!
Keep trying, dont give up... I really think that maybe some docs are coming around. THis doctor is one of the ones who told me a couple years ago that I COULDNT have lupus with a neg. ANA. And today - he feels differently soo......maybe, they are finally getting it? uuuummm...we are not faking it here people - no one wants to be sick - you bunch of dummies!!!
Keep on keepin on!!
Love Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

KathyW1958 · German Shepherd Joined: 12 Jun 2008 Posts: 335

Hi Lauri,

I am very glad that they finally listened to you and diagnosed you. I know full well what it is like to have to wait for years before anyone would take you seriously. I believe that for years I was what they call seronegative also, but then I finally showed the pos ANA test. I did not show a pos ANA until I was also diagnosed with Sjogrens and Celiacs disease. For a while the doctor also thought that I had Scleroderma, but ruled that out. The doctor also ruled out Fibromyalgia. He did some kind of a point test on me and said, Nope, you don't have Fibro. I guess that was a good thing. He just said that I have Classic Lupus and secondary Sjogrens. I am happy for you as now you can get the treatment you so desperately need. I said some serious prayers for you and yup they were answered. I hope that the others that are in limbo can get the answers that will help them too. God Bless.

Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy and now just recently diagnosed with PA and Celiac Spru. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, and B12 shot once a month.

Oluwa · Posted: Fri Jun 27, 2008 4:41 am Post subject:

Hi Laure..

A diagnose...great. The validation you must feel, to know hey, I am not crazy. It is real. I am real. Hugs...bitter sweet, though...eh?

Continue to take care of you, your health..inside and out, physically, mentally and spiritually.

Having IT takes away the feelings of I hope I do not have IT and may lead into denial. I've done that road trip...

Remember prevention is always key, preventing flairs without smokey gray eyeshadow. Treat yourself like you would care for another. Rest, eats, prescription, exercise...find your regime, routine and you will do fine. Remember the care for you with IT is a lifestyle not a week, not a year.

I am doing just that..and I am taming the wildebeest. It takes practice, it takes changing, adapting and changing again. Finding the right amount of exercise and rest, work and play..a balancing act to day well.

Preventive maintenance. Keep the machine, you, lubed...well oiled to prevent break down.

Love,
Oluwa
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laurid8967 · Posted: Fri Jun 27, 2008 5:47 am Post subject:

Thankyou Oluwa -
Yes, bittersweet is true. I am better at taking care of myself than I used to be. I will have to be really dilligent about it though, I have learned even over just this past month how much it does work.
THanks for the kind words, and what is "flair without smoky fray eyeshadow? lol or Prada handbad, or long fur coat? You crack me up!
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...