Do I have Lupus?
Posted , 5 users are following.
Hi all,
I have seen several doctors over the last years and I suspect I have lupus.
My symptoms are:
Chronic fatigue.
Sensitivity to sun, light and heat. I become very exhausted from heat (sometimes I can't move) and my skin is itching after sun exposure. I always need to wear sunglasses when its sunny outside.
Significant and constant microscopic blood in urine. Ive seen one test had small amounts protein and glucose in it too, while the blood amount stays significant in all tests.Ive had CT scan and ultrasound, nothing found that can explain the blood in urine. There was a 6mm lump on the liver that is concluded to be not changing and non dangerous. The next step is likely to be cystocopy. Isn't blood in urine typical for lupus?
Excessive thirst. I drink around 5-6 liters of liquid daily. I always feel dehydrated.
Rashes in face, a small rash on chest and two small on the back. I have seen 4 skin doctors and none of them are 100% sure what type of skin issue I have. Some have mentioned seboreic eczema and rosacea, I think its a type of eczema.
Sometimes I have had bad flare ups when the skin is itching, burning, and new rashes are appearing on my face the next morning that i didn't have when I went to bed.
Paleness. My skin is almost blue:o
Short breathed. Ive been to a lung specialist who concluded I have 65% oxygen capacity of unknown reasons and a type of asthma (?). I dont use asthma inhaler as It didnt help me.
Sometimes I have difficulties with talking, I feel I have a lump in my throat. This is also right, as they found a small lump on my thyroid. This will soon be checked, but this is very normal and usually not dangerous to have. However, thyroid levels are within normal range.
More and more sensitive to food, skin products and alcohol. I have tried "hundreds" of diets to solve my health issues, and I have learned I feel better when I eat gluten free, diary free, partly coffein free, and alcohol free. But this still havent solved the problems.
Stomach pain, bloating, weird sounds. I have fainted twice because of sudden stomach pain in the public. Stomach pain has improved when eating gluten and diary free, but both fainting episodes happened when i already was eating gluten and diary free.
Poor immune system. I become sick all the time, before this i was "never" sick.
Hairloss. Im only 30 and I'm losing a hand of hair every morning 
Weight gain. its almost impossible to lose weight even if I fast.
Difficulty to concentrate, I can't sit still or focus at one thing for a long time at work.
I also have PCOS. Im not overweight and I dont take any medications.
Im not sure what to do, as I have now seen doctors for more than 5 years and I'm desperate to find treatment for whatever I'm having. Im considering to contact a lupus specialist.
Thanks a lot
0 likes, 9 replies
margaret22116 pling78315
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margaret22116 pling78315
Posted
pling78315 margaret22116
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margaret22116 pling78315
Posted
No, be wary of that. It doesn't always show up in a blood test. That's what they forget to tell you. I have another form of vasculitis and attend Addenbroke's in Cambridge for my care and I know they are currently working on blood tests there which can nail the diagnosis. People will tell you...even docs....that there are blood tests which can diagnose it but as yet there aren't. Not conclusively.
I really can recommend a great specialist yes. I normally wouldn't recommend a neuro but this guy is very special.....neuro who is a world authority on neurological issues in vasculitis. He is called Dr Desmond Kidd. He practices at the Royal Free in Hampstead but also has a private practice too. If you can see him privately he will see you within a week usually. Very knowledgeable. Otherwise if you ask for a referral. Some doctors will refer even if outside of the particular area. Mine did but I have a great gp.
lilian05079 pling78315
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There is one definitive test for lupus and that is a dsDNA test along with ESR blood test, CRP blood test and ANA blood test..also the very obvious butterfly rash across the cheeks and nose......also ulcers in the mouth and the sun sensitivity.....also Reyaulds disease bluey fingertips...when you find a Rheumatologist ask him/her to carry out the above tests......best wishes..
pling78315 lilian05079
Posted
Hi that's very helpful, Thank you.
I will ask my doctor to check for it. (I hope he's willing to. )
I have tested for CRP once a week for 3 weeks along with urine tests. CRP was negative while urine tests showed blood in urine each time.
What should CRP show to diagnose lupus?
I might have Reyualds disease. It's the first time I hear about it, but i googled it and my fingers look exactly like the pictures in cold water /weather.
Also When I've had flare ups in my skin I had small mouth ulcers for no reason.
One reason I suspect it is lupus is because I've always had this strong sun sensitivity and it's become worse the last years Combined with increasing fatigue. I think it's a time issue to find a Solution as I'm a bit worried about how kidneys might be affected and because of the increasing fatigue.
lilian05079 pling78315
Posted
CRP is a substance found in the liver and is raised when there is inflammation in the body..if ESR,CRP and ANA are raised it signifies inflammation in the body....all mine were raised and had butterfly rash....but my dsDNA blood test was negative..my rheumy ruled out lupus due the neg dsDNA and diagnosed me with PMR...hope this helps...best wishes...
margaret22116 pling78315
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Hi. According ti John Hopkins only 30 pc of Lupus sufferers have positive a positive dsDNA so I would reasearch it further pling. Good luck.
margarida67433 pling78315
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Hi pling!
I was diagnosed with discoid lupus two weeks ago. I could have written myself your above post because every single thing you write and symptoms you have are the same I have been experiencing since June 2016 after a school visit with my students to Italy where I got a facial rash. From that moment on I have never been the same energetic person/ teacher. In December 2016 I went through a sleep apnea. The consequences were similar to a stroke. I only returned to work in May this year but in June I went to the beach where I live for two hours and since then nothing could help. I' m gluten free, dairy free. I only eat vegetables, fruit, fish but nothing was helpful against hair loss, stomach pain, a feeling of burning in the inside, weight, gas, etc. On the 5th July I had an appointment with my rheumatologist because of deformation of two fingers in my right hand and she told me I would be tested for lupus. Only two days after could I manage to research about it. I did know anything about this disease. Since then I felt I had it and decided not to go to the beach that is about 5km away from my house. My deserved holidays were ALWAYS at home. I just went to a funeral of a family member and was 2 hours outside the church talking to friends and I didn't catch any sun. Only luminosity. The day after I was so swollen and burning like I had been poisoned. This flare took 14 days. I had to wait for my doctor to return from her vacation and I had the veredict. My husband and children couldn't understand what I going through because I was eating so healthy as them. But I thank God to have given me intelligence to listen to my body and to understand the signals of this disease. I have been having joint and muscle pain. Since 17th August. This was the last new symptom. Now I'm taking 5mg prednisone and 400mg hidroxycloroquin. In the first week I felt better. But this week the pain and the inflammation returned after eating 3 Tb spoons of chick peas. Seems crazy, but it is a fact. Legumes must be out of my diet. As well as nightshades.
My anti SM was 13.
ANA was 1/160.
Anti DSNA negative.
Hope you find a good doctor to help you.
All the best.
Margarida, Portugal