Lupus (SLE)

I have been dealing with many symptoms, for just over 2 years now. It all started at a dentist appointment - I was getting a filling done, the dentist injected me with a freezing agent, in my gums when I suddenly went into a hypertensive crisis of 232/170. I was taken by ambulance to emerge, and that is when everything really started. I have always suffered from arthritis-type pain, even as a young child however it wasn't until this incident did it increase by 200%. I am a 21 year old female, who has always dealt with medical problems, even as a young child growing up. I was always ill, always catching something new. It was until after the incident at the dentist, did my high blood pressure, and rapid heart rate show up. I was experiencing a BP of 160-170/105-110 with a heart rate of 140-150. I have since had a loop monitor, along with many other tests, that suggests casual extra beats but nothing that my doctor is worried about. However, what they are worried about is my combined symptoms. Instead of explaining everything, I will list off what I experience on a daily basis.
1.) joint pain (hands, elbows, feet, fingers, toes, knees, ankles, jaw)
2.) swelling in my hands at night "sausage fingers"
3.) ocassional swelling in feet
4.) muscle spasms in all major muscles (stomach, face, legs, arms)
5.) moderate to severe twitching (legs, hands, face, shoulders)
6.) severe back/hip/leg pain - constant throughout the day, unable to sit or stand or drive for long periods at a time (an MRI was done of my back, which showed degeneration of my spine, 2 buldging discs, slipping of a few of my vertabraes along with many other things..)
7.) severe pain in neck down to lower spine when i bend my neck
8.) suseptible to rashes (diagnosed with granuloma annulare on my legs)
9.) lowgrade fevers easily (especially under stress)
10.) extremely low immune system
11.) tingling/numbness down one side of my face, from the back of my head to my jaw
12.) extreme stiffness (unable to put any kind of pressure on my feet in the morning)
13.) Wake up some mornings feeling like a limb is broken, cannot move at all
14.) Feeling of my leg or arm "going dead'
15.) Poor circulation in hands, feet, and chest
16.) feeling of fireworks going off in my body after any kind of exurtion
17.) memory loss (trouble remembering words, and comprehending certain things)
18.) Extreme fatigue
19.) Hive outbreak episodes
20.) butterfly rash over bridge of nose and cheeks
21.) Oral and nose sores
22.) Discoloration on ankles (black/red/purple)
23.) Allergic to birth control

Diagnosed with...

1.) Polycystic Ovarian Disease
2.) Raynauds phenomenon
3.) Hypertension
4.) Sinus Tachycardia
5.) Bipolar Disorder
6.) Anxiety/Depression
7.) Epilepsy
8.) GERD
9.) Granuloma Annulare
10.) Osteophytes in spine
11.) Signs of degeneration in spine
12.) Buldging discs in spine
13.) Mild bilateral bimalleolar soft tissue swelling (ankles)
14.) Milc bilateral hallux valgus deformaties in feet

I have been to several doctors, one being a cardiologist who believes I have an autoimmune disease, possibly lupus. I visited a Rheumatologist last month, who will not diagnose or treat me until the ANA shows up positive in my blood work. I have had my ANA tested 2 or 3 times, and all 3 times, it has come back negative. I have elevation in my CRP, and my mom has had a positive ANA since she was 27. I have heard from doctors, and lupus patients alike, that it can take years for the ANA to show up positive in the blood. I keep getting worse, and no one knows what is going on. Please help:( I live in pain, every single day of my life, and am on medications to help with the pain. Please, any suggestions of advice, would be greatly appreciated.

Thank you in advance,

Steph

[karajo]

Hi Steph, I too am leaning toward lupus or mixed connective tissue.  A little advice, spend time in the sun prior to your ANA test.  About 15-20 min right before you go in to see the dr.  If you have lupus, it will cause the ANA to be elevated.

[luppylupus]

Hello Steph, I am thinking you have Lupus too. When I read your letter it was you were talking about me.I know how hard and painful it is. It seems like every moment of your life your in pain and no matter what pain medication you take it just wont go away. I find meditation a good tool for people like us.Your right sometime it takes years before an ANA comes out positive I know it did for me and many more. I have found out that some people with Lupus also have a thing called Anticardiolipid Antibodies yet unless you ask the doctor to run the test for this they normally don't have the test done. I also come from a family that Lupus runs in yet most rhuemo doctors say it cannot be passed down. I kind of laugh at that cause I had a Grandmother..Mom and a sister who had it.All I can say is enjoy your good days.

[karajo]

Another thought is scleraderma. (swelling fingers and joint pain go along w/ this illness)  I'm not sure what test you need for this.