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[SIZE="4"][FONT="Fixedsys"]I am now 41 years old. My symptoms started 3 years ago. I am unsure what is wrong with me, Rheum. discharged from seeing me telling me it is not a Rheumatic disease??? My ANA is very high 1:2560- My SSA elevated to 68 and all other tests are basically normal. I have ptosis, 2 surgeries last year to lift my eyelids and I had a catarac in my left eye removed 3 years. I have an uneven face now, seems droopy on one side and face is stiff feeling like tight muscles. My left side of body is weaker than right and my left leg drags. numbness and tingles strange feelings on legs at times, things crawling on me, hairs standing up feeling, etc. I have thinning of hair a few times a year also. I have clonus from the spasticity in my legs and lower arms, my fingers and feet feel numb. I have these things daily but they become severe during excerbation. I start with increased fatigue, night sweats, tremors, droopy eyelids, pain, the pain in my legs, joints, bones, nerves is overwhelming. Headaches in the back of my head into my eyes. My cognition and memory is bad, I also stutter or slurr words at times. Eating or cooking dinner is less becuase I am just too tired or takes too much energy to eat. I had all tests done you can imagine Blood and MRIs and Spect scans, all are normal basically but the ANA and SSA. I take Provigil for the fatigue, zanaflex for spasticity, wellbutrin for depression, Percocet for the pain, and my blood pressure meds and zantac, etc. I am sure I am forgetting to add much info in this email. I also get reddened cheeks, like when a person is hot, it comes and goes. I have a very hard time getting to a standing position when sitting, I use a walker with wheels to help me up when I am bad. I have positive babinski in both my feet. Neg. MRIs and all other blood tests negative, any ideas?....It has taken over my life when it is exacerbated and i am now starting another episode. I am unsure whether to call my Neuroligist, I hate prednisone. He is the only one seeing me now. The Rheum docs told me NO LUPUS becuase I did not have the other positive antibodies and they refused to diagnose without the other positive blood tests. I seems to have many of the other symptoms. I also get crusty circular scabby itchy things on my arms and legs...I always thought eczema? but who knows. Ulcers in mouth or mostly throat and is sore alot. I also lose my balance, and things move that are not moving....I just start to fall over and do not realize it until I am about on the ground. I do fall several times a year. I feel like I got bricks on my chest when an exacerbation starts, a heaviness....shortness of breath kind of like I cant get enough air in......I am confused with what is wrong with me, noone is telling me anything but to wait that it can take years for a diagnosis...and I feel an exacerbation coming on now, it is a scarey feeling not having control of your own body and the fatigue overwhelming that you can hardly get off the sofa, the pain is terrible. Also during an excerbation I get so cold and it seems nothing I do can get me warm, especially feet and hands, then when I finally warm up, I am over heated HOT, my feet burn and hands? Please any help....suggestions?...I read your stickies about diagnosis criteria, I fit many or more than 4 of them....MichelleAnn[/FONT][/SIZE][SIZE="4"][/SIZE]
You may like to try a dose of Gelsemium 30c. Gelsemium 30c is a homeopathic hebal remedy which covers your symptoms and can help
Dear MichelleAnn, Hello! There was another SSA = anti-Ro discussion here within just the last week. To get started, you should use the search box above to look for "anti-Ro". There's some very good info on which diseases this autoantibody is seen in. Alas, it is seen in multiple diseases.

I also tested positive for anti-Ro & got little or no help from my suburban drs. I finally went to a NYC teaching hospital rheumie and got help fast. I learned, much to my shock, that I had a "subset" of lupus called SCLE = subacute cutaneous lupus erythematosus. My new rheumie was astounded that so many suburban drs. didn't "get it".

There were several big misunderstandings, I suspect. The main one was that my local drs. expected to see one of the two "classic" autoantibodies = anti-ds-DNA or anti-Sm. They'd never heard of "Ro lupus". I was stunned to see, later on, in Dr. Daniel Wallace's lupus hardcover, that there are SIXTEEN OR MORE autoantibodies & complement problems seen in lupus. The list includes anti-Ro; and anti-La sometimes occurs with it.

Anti-Ro is seen in MULTIPLE diseases, per the info you can find in the search box above. Lupus is just one of several.

You must meet "4" or more of the Am. College of Rheumatology criteria to have *systemic* lupus (SLE). To have SCLE, you don't need 4---but many patients with it have at least 4. SCLE symptoms can extend thru the entire SLE range, but it's thought that kidney & CNS problems are less common in SCLE than in SLE. But both are possible...

In SCLE, ANA is positive maybe 2/3 of the time & is thus negative maybe 1/3 of the time. Obviously your ANA is positive---very!

I had chronic arm/torso rashes that finally helped to prove that I had a form of lupus. After multiple biopsies, a NYC dermatopathologist did one last biopsy, this time doing full immunofluorescent testing. He found the characteristic "lighting up" that's seen only in lupus, so that added more proof.

I hope you post more when you read the info above & have some time to think about which of the anti-Ro diseases that you think you've been FULLY evaluated for. Meanwhile, I'll re-read the info myself. Anyway, bye for now. Sincerely, Vee
Hello Veej and arunsinghal58,
I guess with my symptoms and the HIGH ANA of 1:2560 and a Positive SSA of 68, I see there is some sort of connective tissue disease but the answer is what?......The year before my ANA was 1:1280 and the year before that when my symptoms started it was 1:320....so it has definetely gotten alot higher as my disease progresses and I am getting worse. The damage is permanent each time I have an exacerbation. The ptosis and cataracs are the only thing I am not sure go with Lupus, my eyesite is blurry on and off also. I was tested for Myotonic dystrophy DM1 and DM2 and was negative, but there is now a variant, a DM3 not recognized much at this time and no test, as my catarac was the christmas tree catarac and is a rare type. I thought about a Mitrochrondial myopathy but none of these have the High ANA antibody so I always go back to a Rheum. Disease of somesort. I have too many symptoms for it to be just sjogrens and I was told that, although I read online primary sjogrens can be as severe as Lupus, etc and at times worse, I believe the 2 diseases are part of the same, but then who am I to say. My teaching hospital will not even acknowledge sjogrens as anything else than dry eyes or mouth. I read about your SCLE but I do have Central Nervous system symptoms. I had a Neuro Psych. evaluation and he wrote "Organic Brain DIsease" but that can be caused by any of these diseases. My Neuro Writes ENcephalitis and myopathy of unknown etoligy on his reports....meaning he does not know why my brain and muscles are weak or not functioning right. My Spect scan showed my cognitive problems in the left temporal lobe and also my pain and sensory in the cerebal cortex. It explains all my CNS symptoms and some of my numbness and tingles and pain, but what is causing the damage?....My spine mri showed some vasculitis in the thorasic area but they dismissed that and said I could of been born with it. I had a normal MRA of the brain I was told. I myself looked at the MRIs of the brain and did not see anything diff than the report stated, all was normal. I do not have a spleen so my platelets are always high. My test for sticky blood 2 years ago was normal. I have very sluggish intestines, gastro area which is worse during an excerbation. I guess the typical excerbations and recessions of this disease where you get better but damage is always left more after each episode fits an auto immune disease.

My mom has been in ICU at this hopsital (a rural teaching hospital in the middle of nowhere in central Pennsylvania)since August and on a ventilator that long, she is very ill. I do not have any other family near but a sister 4 hours away. Her ANA just tested positive of 1:640 neucleor/speckled. She has lung fibrosis so I am thinking scleroderma, but the damage is too far for them to look further into it, her lungs are gone, she will never get off the vent they told us. The stress is on myself and my step dad. Its been a rollercoaster ride. If I get sick, there is No one to take care of my kids, their father is no help at all and I been separated for 6 years. I have no one to take care of me if I am ill so I cant get sick. That is what brought me to this board, hoping I can find some answers or information of other disease this could be. STRESS is the biggest factor in my severe excerbations. I guess I just need to ride this out longer and pray...maybe if or when I do get real sick, they will do something. Thats sad huh. I have this hospitals HMO insurance so I am limited on who I can see for my medical care. Thank You, I will do some more reading when I have time. I wish you all well. :)
Dear MichelleAnn, I'm originally from PA, western side of state. What's the closest larger city to you? Harrisburg?

Have you browsed any of the lupus hardcovers? There's one by Dr. Daniel Wallace, and another by Dr. Robert Lahita---both excellent. Many bookstores & libraries have both authors. Dr. Wallace talks a lot about Sjogren's (both primary & secondary)---and every organ system we've got, to boot. FYI, he notes that of all the rheumatic diseases, Sjogren's tends to produce the highest ANA's. He also states that the most accurate test for Sjogren's is lip biopsy.

I had mild neuro problems, despite having "only" SCLE. I had those "creepy-crawlies", too---freakish, huh? And loads of migraines. And uncooperative limbs. My current rheumie wasn't surprised; he told me the whole gamut of SLE problems could occur, kidney & CNS having lower odds---but "lower odds" obviously means you can still have such problems. Plus, there's a pretty big difference between mild & severe neuro problems. People with severe CNS SLE can have severe convulsions, psychosis, etc.---a whole different ballpark, really...

Some of the mild neuro things I had may have also been from persistent anemia. FYI, I had multiple bouts of encephalitis, as a child.

The ACR criteria aren't easy to fathom---but, gee, these people are DOCTORS. The more I think about how my local drs. "understood" them, the madder I get. If it WERE true that anti-ds-DNA or anti-Sm were REQUIRED [which they are NOT], then the criteria would INSTEAD read, "Either of those, plus THREE of the other TEN"! It means what it says, my Manhattan rheumie told me. He also had a few choice things to say about the reports written by my suburban drs., which I cannot quote here!

Looking at which of the ACR criteria I matched, I *think* I was Dx'ed with SCLE because while I was a "4", they weren't the worst 4. Plus my rashes were the annualr SCLE rash. Plus I did not have a positive ANA, or anti-ds-DNA, or anti-Sm, or active major organ involvement. So I fit that SCLE "subset" better. I know one other woman who ahd the same rash & similar labs, but she had some worse things going on: chronic cellulitis, antiphospholipid syndrome (sticky blood), etc. She'd been on steroids for years before a new rheumie realized she could benefit from antimalarial therapy. She's finally doing much better.

My problems went back to childhood, growing more each decade---and like you, by my early 40's, I was really struggling. The skin rashes were what drove me to try again: big targetlike lesions on arms & torso that tracked with my lows. You mentioned your scabby lesions. In the right hands, by a GOOD doctor, such lesions can be biopsied & subjected to stain tests that light up a certain way ONLY in lupus. The results don't say WHICH kind of lupus rash it is, meaning can't distinguish discoid from subacute annular from subacute papulosquamous from malar from bullous, etc. But the results can narrow a rash down to *some* form of lupus---which could be a breakthrough discovery, if found.

Don't forget to try those hardcovers, too. Maybe there's one little telling sentence in one of them that you can get one of your drs. to review. I so hope you can get "unstuck" soon. Thinking of you! I really wish I could help more, as you have so much on your plate, with your mom, kids, etc. I hope you keep posting. All my best, Vee





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