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Lupus - symptoms, diagnosis advice

Hi there. Well I will try and keep this as brief as possible. My daughter who has Epilepsy is also currently getting tested for a secondary condition and the Peadtrician has thrown the word 'Lupus' out there.
Anyway - as you do I have been googling symptoms etc so I can find out more about Lupus and I am a little bit 'shocked' at what I have read because of issues I have been dealing with. Quick background 43 years old, mother of 3, attends gym 3 days a week.
- sore hip, knee and ankle joints - to the point sometimes I fall down as soon as I get up
- Aching hips at night - so much so I often take pain relief
- Swollen feet - one foot in particular that I can't get a shoe on sometimes
The symptoms I have always put down to a hard gym work out.
Next I have 'extreme' episodes of tiredness - 10 hours sleep a night is not enough for me sometimes. I almost feel like some days my eyes are closing by themselves.
Since I was a teenager I have had a skin sensitivity to UV rays - the docs said I was allergic to UV Rays and just told me to stay out of the sun - over the years this has got better but I still am prone to it in areas that don't get much sunlight. So the start of summer I am in a constant rash and its a very sore and aggressive rash.
So with all this been said it's got me thinking - what the heck!! I also for the last few months have had a rash on my cheeks and my nose always looks sunburnt - I thought I was just going through a hormonal change hence the pimply looking sunburn.....maybe not? Needless to say I am seeing doctor next week to sort this out but just interesting about everyone else's stories and what lead to your diagnosis?
3 Responses
15695260 tn?1549593113
Hello and welcome to the forum!  Very sorry about a delay in response as we appreciate your question.  It sounds like you were on your way to see the doctor when you initially posted and we hope that you saw them.  Lupus has tests to help confirm if the diagnosis can be given so I am wondering if you have undergone an ANA test as of yet?  You are concerned about Lupus for yourself and not your daughter, correct? Perhaps they are also testing your daughter.  Feel free to share any more details about her if it would help and you want to discuss that.  

As to your symptoms, the problem with Lupus is that symptoms can be vague at times.  Muscle issues could definitely be due to overuse at the gym and tiredness and fatigue is a common issue amongst busy moms juggling multiple things.  A community leader of this forum has stated quite well what a diagnosis entails for lupus.

There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to receive a dx.

They are:
1. malar rash over cheeks (butterfly rash)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and nose ulcers
5. arthritis
6. serositis - inflammation of the lining of the lung or heart
7. renal disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood countor lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Then there are a whole host of other symptoms.  

You clearly have some of those first 11 things associated with Lupus.  So, I do wonder what the doctor suggested at your appointment and if they did testing.  I hope so and hope you update us.  Also, we hope you will get answers for your daughter.  

Here is more helpful information lupus for you to read. https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
15695260 tn?1549593113
Hello, we were wondering if you were able to see a doctor and how things are going.  Hope you stop back to update us.
5 Comments
Hi Sara. Sorry for the delay in responding. I had the anti -DNA  test and it came back positive but at the same time my doctor moved to another practice so I have to find a new doctor. My daughter is having blood tests in December (they have to sedate her for them) so I am going to ask they test for this as well. Once you have a positive test - where do you go from there? Thanks so much.
Hello Nells26.  That is really frustrating.  So, you tested positive with the most sensitive test for Lupus but aren't working with a doctor.  It's unfortunate the person who tested you left you hanging like that.  Here is some good information on types of tests and their usefulness.    https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/.   The test you took is often a confirmatory test for Lupus as less than 1% of the population that are healthy have this antibody.  Finding a good rheumatologist is the specialty you need to see.  This tool may help:  https://doctor.webmd.com/find-a-doctor/specialty/rheumatology.   Please let me know about your next step.  I'll be thinking of you.
Thanks so much Sara. I will look up this information. My daughter’s peadtrician is also going to test her for Lupus as she has been quite unwell lately. Anxiously awaiting the results. I am going to follow up on my results also and my positive test - my previous doc wanted to rule out any sleep disorders which I have just done so now I need to chase up the next step. I am getting terrible pins and needles at night in both arms and leg cramps and spasms - wondering if this is a new symptom? Will let you know how I go - just need to sort my girl out first...Thank you again x
Daughter just tested positive for same test!!
I am so very sorry to hear about your daughter.  Please let me know what the doctor's next steps are.  We have to be our own advocate in health and you are also your daughter's advocate.  When our kids suffer, we suffer, right? Please keep in touch.
15695260 tn?1549593113
Hello!  A good deal of time has passed but I wanted to see how things are going?  Has there been any improvement?
4 Comments
Sorry Sara. Just logged on for first time in awhile. No things havent got better. She has chronic exhaustion and is sent home from school 2-3 times a week. Teachers say she is trying so hard to work hard and stay at school but the exhaustion is just to much. She is now experiencing 'double vision' - the optometrist is concerned and we have some excercises to do in the meantime and hopefully see an eye specialist soon.  feel completely lost as to what to do - Neurology wnat to do a 7 day EEG but we have to wait at least 6 months for this and peads wants to concentrate on other things (her bowel movements)....so frustrating.
Oh my, that is indeed frustrating and worrisome.  How are things going with the situation with covid-19 and all of this.  I hope she is getting the treatment she needs and with an autoimmune disorder being extra careful.
So far so good - in fact she has been quite good up until the last week. Pale stools, nausea and mild fever.... her last lot of blood work indicated possible 'Liver' issues - so I am now quite concerned........Have her booked into GP next week. Thanks for checking in again Sara.
How are things going?  Any updates?
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