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Old 11-23-2006, 07:17 AM   #1
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MichelleAnn HB User
I was diagnosed with Lupus and Sjogrens yesterday!!

Hello All!!!!
I want to say Thank You for this Message Board. I finally saw my new Rheumatologist yesterday. She diagnosed me with Systemic Lupus and Sjogrens. She said it is definetely connective tissue autoimmune disease, I believe incase she changes her mind someday, who knows. She started me on Plaquenil and I will wean from 50mg of Prednisone that I been on 3 weeks now down to 10mg and be on that for 2 to 6 months. Then we will see how I am doing in 2 months depending on if I stop the Prednisone or start another drug to go with it. I must say she was wonderful, knowledgable and understanding with my symptoms. She stressed how many with active Lupus need to be on disability to get well. Take care of themselves, rest, lower stress, etc. We all know that, it is doing it and being able to afford it. I had taken pictures of my butterfly rash on my face when this flare-up started. Also a picture of my red/purple/white feet when I am so cold. She said they were real impressive. GottaLuv them Cell Phone Cameras. I also took a list of my symptoms and she took the time to go over them with me and ask me questions. She also believes I still may have a type of Muscular Dystrophy or Neuro-Muscular disease not related to my Lupus or Sjogrens. My reflexes and muscle tone and positive babinski, etc...She ordered another MRI of my brain w/wo contrast and a few more blood tests, urine test, etc. She told me your Sedmintation Rate does not need to be high to have active Lupus, but my Alpha 2 globulin being high is an imflammatory sign. My ANA being 1:2560 for 2 years and my symptoms also my ANti-ro being positive. She would feel better if my anti-sm was positive, anti-rna or anti-dna. she reordered them tests, I had them done a year ago and they were negative. OK well now I am rambling, but wanted to let you know I was finally diagnosed after 3 years of being in LIMBO LAND...WOOOOHOOOOO!! (do I celebrate? or grieve?...I am happy to know I am not crazy!!!)
{{{HUGS to ALL}}}
Michelle Ann

 
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Old 11-23-2006, 06:22 PM   #2
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Re: I was diagnosed with Lupus and Sjogrens yesterday!!

Dear MichelleAnn, Wow---answers, finally. I'm glad for you---in the sense of "glad" that we use here, that is. "Ro lupus" is "real lupus", by the way---as "valid" as anti-DNA lupus, or anti-Sm lupus, or low complement lupus, etc.

I once read a transcript of a speech delivered by the famous Dr. Hughes, the British rheumie, in which he wrote (and I paraphrase) that any DUFUS could Dx lupus in the presence of sky-high ANA & anti-ds-DNA & protein in the urine. It's all the OTHER cases in which the lesser known &/or more subtle criteria are present that can flummox drs., he wrote. So I guess you could be his poster child for that speech, right?!

FYI, anti-Ro attacks cell cytoplasm. The better known anti-ds-DNA & anti-Sm attack the cell nucleus.

An aside: my rheumie told me most rheumies don't interpret the ACR criteria correctly, and it ticks him off. Lupus knowledge expands each year---so maybe newer generations of rheumies will understand these things better---hopefully...

Anyway, setting semantics aside---of course you aren't crazy. Hey, WE knew that all along! Keep hanging in there, OK? I hope your add'l tests go well---keep us posted on how you are doing, OK? Best wishes, Always, Vee

 
Old 11-23-2006, 06:40 PM   #3
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Re: I was diagnosed with Lupus and Sjogrens yesterday!!

P.S. Michelle, I forgot to ask if new rheumie warned you about sun exposure. People with anti-Ro are thought to be the most photosensitive of the various lupus subtypes. I got warned right off & very strongly, both by my city rheumie & also by city dermatopathologist.

As for grieving---I think that, rationally, there has to be some of that... It's truly a kick in the pants. But, definitely, to be alive & still standing is good fortune. And now you have solid hopes of improving, which is a lucky thing indeed.

Take good care! Vee

 
Old 11-24-2006, 10:39 AM   #4
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MichelleAnn HB User
Re: I was diagnosed with Lupus and Sjogrens yesterday!!

"Darn I typed my entire response and it disappeared?"

Vee,
I am postive Anti-Ro 84.6, negative anti-b, but I also have a high ANA 1:2650. Many anti-ro lupus patients do not have a significant elevated ANA. If I understant an elevated ANA means it is attacking the neucleus of the cell. Just what antibody is? SHe is retesting my anti-smith and anti-rnp also a CRP and a CK, a urinalysis and an MRI of the brain. I see Neurology on Monday so I hope to discuss my Rheum appointment with him and get a few results. I want a cervical spine MRI also, I hope my Neuro. will schedule that. I also have an elevated Alpha 2 globulin and low gamma globulins. I just need to get this "Lupus Migraine" thingy undercontrol. That is what the Rheum. doctor told me my right side facial numbness is and the overwhelming pain in the back of my head and stiff neck. This Rheum doctor was very good and being female helped. She understand the female aspect and responsibilities of life and then being sick with Lupus can be unbearable. Thanks Vee!!!

 
Old 11-24-2006, 03:09 PM   #5
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Re: I was diagnosed with Lupus and Sjogrens yesterday!!

Hi, Michelle. Dr. Wallace says in his hardcover that Sjogren's is the autoimmune that correlates to the highest levels of autoantibodies, but cites only ANA & rheumatoid factor, both often well over 2,000, to illustrate. For what that's worth... (maybe nothing? )

This new rheumie sounds like just the dr. you needed, big-time. So that's definitely something to celebrate, finding her! I hope things go well next week & no new headaches---they are beyond misery, I know. I'm so glad for you that you've made such progress! Vee

 
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