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I am a thirteen year old girl. I have been having symptoms of awful neuropathic pain in my legs, bad headaches, dizziness, heart palpitations, stiff hands, dry eyes and mouth, trouble typing can't write, chest pain and pressure, nausea, muscle pain, body aches, sick feeling, trouble thinking and concentrating, hard time remembering things, sores in my ears, rash on my cheeks that looks like a butterfly rash, short of breath, can't walk without a walker, and awful weakness. I also have bad back pain and neck pain. I have been diagnosed with antiphospholipid syndrome. I also cannot sleep at night but I can not stay awake during the day I am always tired. I have been losing a lot of my hair also. Does anyone know what this could be? Does this sound like lupus or lyme disease?
They have tested me for sjrogens syndrome but I haven't heard what the results were. I have been tested for myasthenia gravis but it came back negative so they don't think it is that. I have not had a full body ct scan yet I have only had like a chest ct but that was awhile ago. I don't think I have been tested for any viruses yet but I will ask about that. My hypothyroidism is under control and I am completely sure we just saw my endocrinologist alittle while ago. I do have Hashimoto's but my antibodies are back down so the do not think that is what is causing anything.Thank you for everything. If you have any other ideas please let me know.
Yes I am seeing a rheumatologist that is the doctor I was talking about. She hasn't run all the blood tests on me yet because of the steroids so we are waiting till I am off. Antiphospolipid syndrome is a blood clotting disorder so it is somehow connected with lupus. I don't really live near a wooded area but I do play in grass alot or I used to before I got sick. I am having neurological problems and rheumatological problems. Right now I could possibly be having a flare with everything that is happening if I have lupus.
As for other diseases (sorry, forgot this part in my last post).....dry eyes and dry mouth, along with a few other symptoms points to Sjrogen's. The extreme muscle weakness and fatigue could be myasthenia gravis--which is associated with other autoimmune diseases, particularly thyroid disease and lupus, interestingly enough. A simple blood test can diagnose both of these. Fibromyalgia is also worth considering, given your chronic pain, and this may show up in a CT scan of your chest, along with sarcoidosis--but aside from imaging, bloodwork is difficult when it comes to diagnosing either of these. Chronic Fatigue Syndrome is something that comes to mind, as well as multiple sclerosis, though these would be more of "last resorts" to consider should your bloodwork come back normal for everything else. It definitely sounds like whatever you have is adversely affecting your muscle tissue, and potentially bone tissue, primarily. Have you ever had a full-body CT scan done to identify any problems?
A common virus, the Parvovirus B19, can cause a rash that appears you face intermittently (this rash would make you look as though you've been slapped on both sides of your face), and easily effects people with weakened immune systems. You might want to have your doctor check you for this, while you're getting bloodwork done. Also have your doctor include tests to check for the Epstein-Barr Virus (EBV), which has been linked to some autoimmune diseases, and many other malicious diseases, and can cause chronic EBV infections that wreak havoc on our bodies' immune systems. CFS is linked to this, though scientists aren't quite sure how, just yet.
Are you sure your hypothyroidism is under control? How often do you have your TSH checked, and what was your last TSH reading (free T4, if you have this checked, too)? Were your thyroid antibodies checked to see if you have autoimmune thyroid disease (Hashimoto's, in this case)? Double-check that everything is good on this front so you can eliminate any symptoms that might be caused by thyroid problems cropping up recently that you're unaware of.
Hope this helps!
A common virus, the Parvovirus B19, can cause a rash that appears you face intermittently (this rash would make you look as though you've been slapped on both sides of your face), and easily effects people with weakened immune systems. You might want to have your doctor check you for this, while you're getting bloodwork done. Also have your doctor include tests to check for the Epstein-Barr Virus (EBV), which has been linked to some autoimmune diseases, and many other malicious diseases, and can cause chronic EBV infections that wreak havoc on our bodies' immune systems. CFS is linked to this, though scientists aren't quite sure how, just yet.
Are you sure your hypothyroidism is under control? How often do you have your TSH checked, and what was your last TSH reading (free T4, if you have this checked, too)? Were your thyroid antibodies checked to see if you have autoimmune thyroid disease (Hashimoto's, in this case)? Double-check that everything is good on this front so you can eliminate any symptoms that might be caused by thyroid problems cropping up recently that you're unaware of.
Hope this helps!
Are you seeing a rheumatologist (I'm hoping that the "doctor" you speak of is one)? They're experts in autoimmune diseases like lupus and they'd know some more specific tests to run in order to fully evaluate your condition, since it sounds a little complex with both your antiphospholipid syndrome (how is this connected to lupus? I can't say I've ever read about this) and hypothyroidism. To check for Lyme disease, you can have a simple blood test done--this might be worth your while, but if you aren't experiencing facial palsy or neurological problems, the likelihood of you having Lyme disease is fairly slim. That, and you'd have to live near a really wooded area to increase your likelihood of exposure (and I can see from your picture that you have an animal, so that helps transmission).
As for lupus...you can have another blood test done to look for antibodies to dsDNA, which stands for double-stranded DNA, to determine if you may have lupus despite the negative ANA results. Unfortunately, the dsDNA test values fluctuate and may become negative over time, something that a rheumatologist would have to take into account. Did you have your Erythrocyte Sedimentation Rate (ESR) measured, by any chance? I know that this is often elevated--greater than 100 in many cases--in patients with lupus. A normal ESR level is up to two times your age. While an elevated ESR doesn't automatically mean you have lupus, it will indicate you have some serious systemic inflammation occurring, which could be lupus.
Typically, lupus is a cyclic disease that has flares, when you'll notice symptoms worsening, and periods of remission, when symptoms are minimal or completely absent. Have you noticed any "flares"? This would include a sudden onset of high fever, increased fatigue, dizziness, joint aches/pain, muscle aches/pain, gastrointestinal problems--like a stomachache, worsening rash, and/or a headache. While you may have a rash that crops up every now and then, what's important is whether or not this is occurring in concert with anything other symptoms. Is your rash only on your face, or have you noticed it anywhere else on your body?
It's very probable that you may have lupus given your symptoms, but the only reason I hesitate to say that you definitely have it is your negative ANA results (which I recognize can be affected by drugs) and the rarity of this disease. Is there any way you could have the ANA test redone when you're not on medication that might interfere with the results?
As for lupus...you can have another blood test done to look for antibodies to dsDNA, which stands for double-stranded DNA, to determine if you may have lupus despite the negative ANA results. Unfortunately, the dsDNA test values fluctuate and may become negative over time, something that a rheumatologist would have to take into account. Did you have your Erythrocyte Sedimentation Rate (ESR) measured, by any chance? I know that this is often elevated--greater than 100 in many cases--in patients with lupus. A normal ESR level is up to two times your age. While an elevated ESR doesn't automatically mean you have lupus, it will indicate you have some serious systemic inflammation occurring, which could be lupus.
Typically, lupus is a cyclic disease that has flares, when you'll notice symptoms worsening, and periods of remission, when symptoms are minimal or completely absent. Have you noticed any "flares"? This would include a sudden onset of high fever, increased fatigue, dizziness, joint aches/pain, muscle aches/pain, gastrointestinal problems--like a stomachache, worsening rash, and/or a headache. While you may have a rash that crops up every now and then, what's important is whether or not this is occurring in concert with anything other symptoms. Is your rash only on your face, or have you noticed it anywhere else on your body?
It's very probable that you may have lupus given your symptoms, but the only reason I hesitate to say that you definitely have it is your negative ANA results (which I recognize can be affected by drugs) and the rarity of this disease. Is there any way you could have the ANA test redone when you're not on medication that might interfere with the results?
Yes I had blood work done and I have antiphospolipid syndrome which is connected to lupus it came back negative because of the steroids but my doctor really thinks I have lupus. I don't think I have lyme disease I was just wandering if it could be that.Yes my butterfly rash does get worse with sun exposure and when I wake up from taking naps and in the morning.I did have hypothyroidism but it is under control now.Yes my doctor thinks I have a connective tissue disorder but she really thinks it is lupus. Do you have any idea of other diseases it could be? Do you think I have lupus? Thank you so much. Please write back.
This sounds a lot like lupus. Did you have bloodwork done that included ANA, which would test for lupus? Lyme disease, unless present in your system for an extended period of time (read: years) would not have symptoms this severe. Typically, it presents as extreme fatigue which progresses to neurological degeneration, at which point it is usually caught, and treated.
Have you noticed your butterfly rash get worse with sun exposure? Have you been checked for thyroid disease, by any chance? A lot of your symptoms can be explained by diseases other than lupus--many of them autoimmune in nature, as well--but the symptom that really distinguishes "lupus" from the rest is the butterfly rash.
I hope you find out what you have soon so you may start on the path to recovery. Lupus is treatable, as are most other autoimmune diseases. It's just a matter of figuring out what's going on.....Keep us posted!
Have you noticed your butterfly rash get worse with sun exposure? Have you been checked for thyroid disease, by any chance? A lot of your symptoms can be explained by diseases other than lupus--many of them autoimmune in nature, as well--but the symptom that really distinguishes "lupus" from the rest is the butterfly rash.
I hope you find out what you have soon so you may start on the path to recovery. Lupus is treatable, as are most other autoimmune diseases. It's just a matter of figuring out what's going on.....Keep us posted!
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