Could I have an autoimmune disease causing bi-lateral swelling?

[deadend]

I am 31, for the last 6 years have gone through numerous tests and been to many specialists. I’ve had MRI’s, CT’s, Blood work, Ultrasounds, Sonograms, EKG, echocardiogram, x-rays etc... All the test come back normal however the symptoms persist and now for the last 8 months I've had bi-lateral swelling of the legs as a constant condition added to the others I have listed below. The swelling never goes away, somedays are just worst than others. I'm exhausted and frustrated in that we have not been able to find out what's causing my symptoms. The pain is unbearable and I do not know where else to turn. I'm hoping that someone here and offer suggestions. Thank you.

These are the symptoms I deal with daily:
Fainting occasionally, become pale, lips blue
Sensitivity to cold – turn bluish hands and feet
Racing heartbeat occasionally
Lightheadedness
Fatigue
Common colds develop into something more and lasts for weeks
Chronic Sinusitis and persistent coughing
Headaches/Migraines – daily, not sure what’s it like not to have one anymore.
Joint pains – neck, back, knees, ankles, jaw pain, wrists, hip, etc..
Right flank pain comes and goes, sharp pain
Irregular bowel movements
Irregular menstrual cycles
Severe Itching of the legs
Sharp chest pain over left side, occasionally
IBS
Bilateral swelling of my legs from above knees, downward – every day since 9/2005
Swelling is not relieved by elevation
Legs, ankles and feet tender to touch, hurts to walk
Muscle soreness and muscle spasms and cramps
Numbness/tingling in arms – during the night
Trembling of hands every once in a while
Borderline Hypoglycimic
Difficulty Sleeping

I have been seen by a Cardiologist and Urologist which have cleared both my heart and kidneys.  I have also had a few ultrasounds/sonograms of my legs that were clear for any blood clots.

I have also been to chiropractors, physical therapists, accpuncturist, oral surgeon, orthopedic and a neurologist.  Any tests that they have completed comes back normal.  None of the medications that they have provided seem to help.  My primary and I are at a loss in the direction that I should take from here.  I do have one last blood work test that they were going to check my thyroids that I should have the results tomorrow.  My previous blood work didn't show any abnormalities.  Any information you may have will be greatly appreciated. Because right now I'm at a dead-end.

[Kevin Pho, MD]

Many rheumatological diseases can lead to the symptoms you are describing.  You clearly have been through several physicians and have undergone many tests would have ruled out many of the major disorders.

An ANA level as well as a rheumatoid factor level can be considered to evaluate for rheumatological disease.  I would also consider a blood count and markers of inflammation such as a sedimentation rate as well as C-reactive protein.  

These options can be discussed with a rheumatology referral.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b

[bengalcats]

GEE YOU SURE HAVE A LARGE HOST OF PROBLEMS. I HAVE MANY OF THE SAME, HAVE BEEN BACK AND FOURTH WITH dOCTORS FOR 15 YEARS, EVERY TEST KNOWN TO MAN, EVERYTHING NEG. SOME OF MY SYMPTOMS ARE THE ITCHING WHICH IS EXTREME AND FOR NO REASON ON MY LEFT FOOT, PLUS ITCHING UNDER MY JAW, THIS LASTED FOR OVER A MONTH THEN WENT AWAY, ONLY MY FOOT GETS IT EVERY NOW AND THEN AND IT WILL LAST A FEW WEEKS. IN ADDITION TO THAT I GET SWELLING IN MY UPPER CHEST AND BACK AREA AND IT MAKES MY BRA VERY TIGHT LEAVING DEEP MARKS IN MY SKIN, THIS LASTS FOR MONTHS AT A TIME THEN GOES AWAY BUT THEN RETURNS, NO ONE KNOWS WHY. i GET WEIRD FEELINGS IN MY BRAIN, AND FREQUENT HEADACHES SINCE SEPT 05, I LIVE WITH SHOULDER ,ELBOW,NECK, KNEE, HAND , LEG BONE PAIN MANY TIMES A YEAR, MY FEER ARE STIFF AND PAINFULL WHEN I WAKE UP BUT IT GOES AWAY IN A FEW MINUTES. I HAVE HAD MANY VISUAL PROBLEMS,WEIRD TINGLING IN MY BLADDER AND TINGLING IN MY HANDS AND LEGS, IT HAS BEEN MORE NOTICABLE AT NIGHT BUT I DO NOT UNDERSTAND WHY.THERE ARE SO MANY OTHER THINGS GOING ON. LOOK INTO THE NEURO AND THE UNDIAGNOSED SECTION OF THE FORUM, I HAVE ALOT OF POSTS THERE. AFTER ALL THESE YEARS i CHANGE NEUROS AND THIS NEW ONE FEELS I HAVE MS SO I HAD A LUMBAR PUNCTURE TO FIND OUT/ HOPE YOU CAN GET SOME ANSEEWERS SOON.

[bengalcats]

I WAS TOLD ONCE I HAVE LYMPHEDMIA, PROBABLY SPELLED WRONG, I HAS SWELLING AND REDNESS ALON MY SHIN BONE FOR A MONTH AND IT WAS VERY PAINFULL.

[who_is_this]

Sally?  Is that you?

[bengalcats]

dont know who you are responding to but no bengal cats is not sally.

[deadend]

Not sally.

[Tiburonsweetie]

I too have been forced to face the symptoms that occur with autoimmune disease.  All my bloodwork is currently negative, but I am only 24, so the doctor says it likely when I am older my bloodwork will come back positive.  My mother has Schleradoma, sister has juvenile RA (in remission), Gram-diabetes...so as you see Autoimmune is in my family.  I didn't see if you mentioned whether or not it was in yours?  It is known as a genetic disorder.  Recently there have been articles published that link endometriosis to autoimmune disease, you may want to look into that.  Don't give up, it's hard, but when your body is telling you something is wrong, something is wrong.  Depression also occurs with Chronic Pain & can cause may physical symptoms as well (including back pain).  Goodluck, I'll pray for you.

[pandr32]

Wow! I am going through so many of the same things with a few extras. Doctors have been baffled and tests all come back negative just like yours. I was fine until about a year ago when things really hit the fan, but before that I had symptoms, just not quite so many. I am currently waiting on a few more test results (tumor, and lupus) and I am being looked at by an allergist as well. I always had some allergies, but perhaps there is a rare allergy involed. I intend to find out. The doctor says he has only heard of one person not counting me. Please keep us updated about what you find out and I'll do the same.

[Semoore]

Hey! everyone, I am so glad to see that I am not the only one with these kinds of problems.  I have been having a lot of the same symptoms for 15 years.  I am 44 years young but most days I feel like I'm 90.  Guess I have had every test and procedure known to man.  

I have been diagnosed with degenerative disc disease, fibromyalgia, chronic fatique syndrone, chronic sinusitis, mastoiditis, I have high blood presure, high chlolesterol, I have year round allergies, asthma, chronic bronchitis, angio-edema, carpal tunnel, osteo and rheumatoid arthritis, heart murmur,Irritable bowel syndrone, an upper GI indicated precancerous cells in my stomach, I am also hypoglycemic. Currently my doctors are trying to rule out sleep apnea, myastenia gravis and Multiple sclerosis.

And then there's the Psychiatrist who everyone refers me to.  He 's the only one that doesn't make me think: that they think: I'm just fat, lazy and crazy.

Maybe once they run out of friends to send me to and everyone gets their share from my insurance company they will actually figure something out. As for now I take 20+ medications a day most of those more than once. I sleep? with a vaporizor at bedside, do nasal irrigation 2X a day, check my peak flow and my blood presure 3X daily, and keep my rings around my neck( which by the way are on a 24K gold chain) so as not to cause a rash due to sensitivity to nickel.

[genieinabottle]

Just knowing I am not alone is a comfort.  My symptoms are not as lenghty but still very frustrating to me.  For over a year I have had swelling in my ankles, lower legs and upper leg near knees.  It is in both legs, however it is NOT on my feet.  I also have extreme itching, mostly on upper thighs but also lower leg around back of knee.  Oddly, when I was on Naproxin for an injury the itching went away - baffled my dermatologist but everytime I take Naproxin I don't have itching!  I was sent for lymphatic physical therapy for the swelling, but no resolution.  I have a great doctor who will send me for any test but she can't figure out the cause.  Thought it might be oral contraceptive related but off those for almost a year now and no help.  Have noticed increased bruising, tenderness of shins increasing, fingers get cold and stiff easier, sharp pain in hip and knee joints of right side only (these are not constant but come and go).  I know that we will all find the person/treatment that will help us resolve our health issues - hopefully soon :)  
Anyone else have ideas on what might be causing this, what tests I should ask for, etc?

[Tiburonsweetie]

It is clear that their is something going on with our bodies that should not be.  Most of us just need others to realized and believe that.  The best thing we can do is make others aware of what autoimmune disease is!  I hate hearing the phrase at least you don't have cancer.  Has anyone ever gotten that yet?  It's like, wait, isn't there a cure for cancer?  Cancer is a horrible disease I agree, but living with chronic pain for the rest of my life is not something I am ready to deal with & I am hoping I continue to have the energy to fight for a diagnosis and a cure.  

Here's a website that may answer some questions:

http://www.4woman.gov/faq/autoimmune.htm

I encourage everyone to go the website below.
Do the survey to help give information on autoimmune disease.
Check to see if there are any bills in congress supporting research on autoimmune disease & write to your senator.

http://www.aarda.org/

I got a shot of Cortizone (steriods) several months ago & it really helped my knees feel better.  Unfortunately, they are starting to have sharp pain and get swollen again.  My legs & hands are constantly tingling, due to lack of circulation.  I also have to use the bathroom as soon as I lay down at night, does that happen to anyone else.  I am assuming fluid in my legs may flowing back to my urethra.

Still praying for everyone & wishing them luck!

[onered]

OMG, I am having such similiar problems with swelling below my knee area, I have been to 5 Doctors and an emergency room and still everything comes up normal, except the doctor bills, it has been 4 months and still the swelling either stays the same or gets worse.  I wish I knew what it is, I refuse to go to anymore doctors, I have gone to my Primary Care Doctor, Cardio, Neuro, Ortho, Vein and ER doctor.  I don't even think there is anyone else to go to, they should really do research on this instead of telling us maybe it could be lymphedema.  I am on the same boat, someone, anyone, help, I am sending out an S.O.S.

[Kalio1]

Anyone having these types of problems should be checked for Hep  C. ALL of the symptoms mentioned on deadend's list can be symptoms of viral hepatitis. Please be checked for hep c, it is a simple blood test. Hep C is often misdiagnosed and can be hard to diagnose through symptoms that seem unconnected but are not. You can have normal liver function test results and still have this virus so you have to be tested for it specifically. The clues come down the road if your liver is damaged and often not before so have that simple blood test and rule it out. Millions of people have it and don't know it or are misdiagnosed as having chronic fatigue or fibromyalgia. Also many people have it and have no idea how they got it.

[onered]

How does swelling in the bi-lateral area have anything to do with Hep C???