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Old 11-24-2012, 09:24 AM   #1
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Unhappy Lupus possible?

This may be a long post. I will try to keep it as short as possible. I was just recently told I possibly could have Lupus. I am a 51 year old female. My GP received results from my gastro and is further investigating. I have a positive ANA. I am in terrible pain, neck, back, knees, ankles, and fingers, much joint pain. fatigue, brain fog and poor memory (so much I am concerned about early alzhiemer). I had at first a positive diagnosis of Hep C, but absolutley no reason to have contracted it. Liver biopsy done, neg on the virus, but liver inflammation. Barrett's esophagus, gastritis, gallbladder removed, it was diseases-no gallstones present just enlarged and covered in scar tissue to the point you could not see the actual organ. Many precarcinoma polyps removed from colon, stomach. Was diagnosed with fibro, but no meds that have given relief. wierd round sores on scalp and neck that took a year to heal. Just open like ulcers. Teeth are breaking and cracking regardless of regular oral care. I am working full time but questioning if I can continue this High-stress job. I work with SED (Severly emotionally Disturbed Children). Have had in past redness in cheekbones and across nose. Not currently very noticable. Have very dry eyes, and had to have plugs placed in my ducts but my eyes still bother me on a regular basis. I am scared my quality of life will not get any better and this is something that is playing strongly on my mind. How do I live with this and I want a long productive pain free life. Sounds I guess too much to ask for but now what? I don't run a fever , I have just the opposite, very cold feet and hands when the weather gets 70 degress or below. My body temp runs low and it is hard to stay warm. Thyroid tests in the past by an endocrinologist were all negative. I do have thyroid nodules and low vitamin D levels. I have been on precription vit D in the past but it has never reached normal levels. Does this sound like possibly Lupus? Am I too old to be diagnosed with Lupus? IS there other autoimmune diseases that i am not aware about? I did see a rhuematologist several years ago, thinking I had artheritis, I made a list of concerns and questions, she basically told me it was all stress related and I felt like she was arrogant, and dismissed my concerns as if I was a middle aged neurotic woman that all my complaints were somatic. I never went back and just lived with my pain but it is getting unbearable and i want my life back. Any comments, suggestions, or help will be greatly appreciated. Thank you so much.

 
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Old 11-24-2012, 04:10 PM   #2
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Re: Lupus possible?

You do have symptoms that could fit with lupus, plus the dry eyes could indicate Sjogren's syndrom, an autoimmune condition that can accompany lupus. You are not too old to be diagnosed with this. Lupus cannot be cured but it can be treated, so your fatigue, pain, brain fog, etc can improve and make you feel better in time. It takes time to figure out what treatments and what level will work for each person, but at least if you get a diagnosis, you can get treatment for this. Your GP should refer you to a rheumatologist when all your test results are back. I would make a concise list of all the symptoms you have and all the conditions you have been treated for. If the redness in face or skin lesions occur, take a picture to show your Doc, in case they are not present when you see him/her. If you'd like you can post your lab results for comment.

Last edited by ladybud; 11-24-2012 at 04:11 PM. Reason: typo

 
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Old 11-25-2012, 05:41 AM   #3
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Re: Lupus possible?

Thank you, Ladybug. My doctor presribed Cymbalta, at least til she begins to figure out what the diagnosis is. I can't say I feel any different. She said she has had success with the drug with patients with autoimmune diseases. I increase it this week but will see. My brainfog is horrible. I am in the process of getting my PhD in philosphy and Christian counseling, but can't focus or get my thoughts together. I have trouble putting complete words together and getting down on paper what I want to say. This is so frustrating. My husband will talk to me and it takes a few to respond but I am so slow. He is getting frustrated and thinks I am ignoring him. My work, I know, is suffering. I don't seem to be able to repond quickly enough to the events happening in the classroom, which could be dangerous. I just started this new job and can't afford to lose it. I am the main bread winner in the family because my husband is disabled. I am sorry, I am rambling, I know this is not the place to tell your feelings but I guess I am scared.
thank you for all who listen.

 
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Old 11-25-2012, 08:40 AM   #4
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Re: Lupus possible?

Hi & welcome. I'm sorry for your problems, not easy. Reading your post, I also thought of lupus and Sjogren's. And hypothyroidism, even though your labs were normal when done last. I HOPE OTHERS CAN COMMENT ON THIS: can nodules suggest levels will change eventually? (Please excuse the caps, I'm only hoping to attract input.) Hypothyroidism can co-exist with both lupus and Sjogren's. If your tests aren't recent, that alone may suggest it's time to re-do them.

There are a variety of rashes possible in lupus. The most common are the classic malar (aka butterfly), discoid lesions, and SCLE lesions. Are your lesions/rashes photo-sensitive, meaning sun-induced? (That can suggest a lupus rash.) If lesions scar or depigment or cause permanent hair loss, those could be clues for discoid lesions. SCLE lesions tend not to scar or depigment and are associated with anti-Ro, an autoantibody also seen in Sjogren's.

Vitamin levels are often depressed in the inflammatory autoimmunes. I've had low D and B-12. These are non-specific findings because they're seen in multiple conditions.

Lupus can affect the liver: inflammation, enlargement, jaundice, clots, etc. But a book I keep handy says abnormal liver function labs (AST, ALT, and GGT) can occur in 30% to 60% of lupus patients, yet *most often* abnormal liver labs are just blips that cause no symptoms, meaning false alarms. Autoimmune hepatitis is potentially severe, but it's associated with sky-high values and lots of symptoms---which you don't cite, fortunately.

There are some excellent doctors out there, we just have to find them, so I hope you keep trying & touch base when you can. With warm wishes, Vee

 
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Old 11-25-2012, 11:35 AM   #5
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Re: Lupus possible?

I agree that thyroid studies should be looked at again, since you mention your body temp runs low, and hands and feet are always cold. You might also notice if when your hands and feet are cold if they are also discolored, blue-purple, red, or dead-white. If so, you can take a picture of that too, as it would indicate Raynaud's, a vascular manifestation (spasms in small arteries) that accompanies many autoimmune conditions. Thyroid nodules could indicate Hashimoto's thyroiditis, another autoimmune disorder that can cause underactive thyroid hormone production. Many of these things can co-exist, but hypothyroidism can be treated and make you feel so much better, helping the fatigue, brain fog, memory problems. So keep up hope that you will get answers and once treated, your life back on track! All of us with these illnesses remember the struggles before diagnosis like it was yesterday. You have our empathy and support!

 
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Old 12-10-2012, 04:54 AM   #6
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Re: Lupus possible?

Well my test results came back normal. So one time I have a positive Ana and now I don't. So I have had in the mean time a symptom return with a vengeance. I woke up with horrible neck pain to the point I couldnt move my neck and I would get a sharp shooting pain down my spine, then it just became severe pain. Went back to gp doc and she did an dray. Xray showed osteoarthritis in neck. The pain got so severe by Saturday hubby took me to the ER. They gave me percocet and a steroid pack and told mr I needed to see a orthopedic dr that deals with spine and neck. I am in severe pain without the percoset every 4 to 6 hours. What really is frustrating is I have to go to work because I am not replaceable in a call off I am sick basis unless I am dying. I teach in an alternative school for adolescence with mental health problems and autism. Not to mention it is my first year at this school. I do have a very physical job because many of the children are violent and I have to physically restrain them. Being 51, this is a little much for me but I need a job and the medical insurance. I am assuming this is not lupus because the second ANA is normal, thyroid was normal. I have a feeling this is going to be a long road to a diagnosis.

 
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Old 12-10-2012, 06:13 AM   #7
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Re: Lupus possible?

Hi. I'm sorry to read about your ER visit. After you see the orthopedist, if you feel the need to go further, here are some more thoughts on lupus & one on "all other". I'm just a patient, so please read in that light.

Do you still have the scalp & face sores? In lupus, lesions & rashes can present a second path of inquiry. There's a "sticky post" (permanent info post) with rash info that you could read. If any of those look possible, you could a see a dermatologist, for an exam & biopsy. Actually, I'd see a dermie to find out what they are, even if you don't think they're lupus lesions.

A negative ANA doesn't truly rule out lupus. Here are some reasons:
1. In people with cutaneous-only lupus, ANA is almost always negative.
2. In people with systemic lupus, a very small percent stay ANA-negative but test positive for anti-Ro. This is called Ro-lupus.
3. In those who are ANA-positive at times, the ANA level often vacillates as flares come and go.

Re: spinal pain, in lupus inflammation loves places where the body has synovial fluid. I think the upper cervical spine has some.

Changing the subject from lupus... Another rheumatological condition, called Polymyalgia Rheumatica, was discussed here recently. HUGE pain, can appear fast, even overnight, in upper shoulders, also neck & upper thighs. Is treated with steroids. (For what that's worth...)

Let us know how you do. Wishing you good luck! Hang in there. Bye, Vee

 
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Old 12-10-2012, 09:06 AM   #8
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Re: Lupus possible?

I agree with all Veej said. There is synovium in the cervical spine joints, a favorite place for inflammation to occur in autoimmune disease. Were these test results from your GP or a rheum? Since you have so many symptoms, I would still see a rheum, and ask for the full gamut of tests that can be done to rule out all autoimmune conditions that fit with your symptoms. There is also a new lupus test, more sensitive than the standard one, called Avise SLE, that some rheums may have or they can order it from the manufacturer. It is used for hard to diagnose cases.
There is a good chance some of the neck pain is from spasm of muscles. I would ask your doc for a muscle relaxant RX to take along with the other meds. You may have some disc involvement, which the steroid pac should help, but I would definitely see an orthopedist spine specialist or a neurosurgeon and get an MRI for more info on the soft tissue in neck. If a disc is bulging or herniated, a soft cervical collar can be helpful with pain, and those are OTC at most drugstores. Just take a neck measurement before going, a circumference, to get the right size.
Regarding the labs, I would get a copy of your recent ones so you and the rheum know exactly what was tested, and will have results for comparison with any repeats. There are many lab tests besides an ANA that can be done to provide clues and a path to diagnosis. A skin biopsy of lesions with immunofluorescent studies (important part) may give you a diagnosis and I certainly would pursue that whenever you have lesions. Good luck, and keep in touch for support and feedback.

 
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