Frustrated

[vexrll]

I am sure that you guys have heard this story over and over but, have all the signs or lupus. I don't think I have read any posts on here that I didn't say me to. Had lupus blood work ran twice and everything else under the son. All comes back negative except rbc is high. Unable to work, think straight or be in any type of light or heat. Not sure what to do. Any suggestions would be greatly appreciated.

[Paul_Howard Partner LUPUS UK]

Hi Vexrll,

It might be worth seeking a referral to a lupus specialist for a second opinion. Their additional experience in recognising the signs of lupus and making diagnoses might help you get an answer for your symptoms and perhaps start some treatment.

If you let me know whereabouts in the country you are then I can let you know who your nearest specialist might be.

[tsizzle]

I'm sorry you are going through this! It's a very difficult and isolating process. 6yrs, 10 doctors and a whole lot of aggravation. Still not diagnosed! I treat my body as I've been diagnosed. Very strict diet, a lot of rest when I need it, no alcohol. I've had to rearrange my whole life. Just keep your head up and please rest and don't fight it. I found myself doing that and it just made me feel worse! Eat as much anti-inflammatory foods as possible. I'm a big fan of turmeric for inflammation. Don't get discouraged! This forum has been very therapeutic for most of us. If you need us we are here. Feel better soon xo

[tennissenior]

Lupus would give you low numbers. White count would be very low and at times, I had a high RBC. It just means some of your red blood cells are odd shaped. Trust us - if you had Lupus you would have a lot of abnormal labs. What were some of your numbers - i.e., white blood count, platelets, lymph, etc. And did you have an ANA test???? Was it positive???

[hmbuss in reply to tennissenior]

same here lots of low white blood counts neutrophils lymprocytes etc then atlast did an ANA Test which came back positve

[tennissenior in reply to hmbuss]

Positive ANA can mean you have one or more Autoimmune diseases. There are so many......

[katensteve]

Just and idea but have you had your B12 checked as well. I am B12 deficient and have those symptoms

[tennissenior in reply to katensteve]

B12 works for red blood cells and hemoglobin. I was deficient in B12 and once I started taking one a day, my hemoglobin is pretty steady - between 11 and 12. Deficient B12 can cause Pernicious Anemia.

[hmbuss]

keep going back it took along time before they diagnosed me!

[Tiras]

During the summer my lupus flares up bad, especially on skin and lesions. I have a lupus blister on my left foot and can not wear shoes. I also have one at the top of my right leg where it joins the upper body right at the creas. I can not wear pants or underwear.