Discussions By Condition: I cannot get a diagnosis.

Do I have Lupus or what else might it be?

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: Anonymous
  • June 10, 2007
  • 08:11 AM

I have been going through a medical nightmare for over two years now. What, at first, seemed like a separate and random occurrence of symptoms has become too prolonged after symptom-specific "treatment" and too consistent to be considered separate and random any longer. However, I am having an impossible time convincing the specialists and, especially my primary care physician, that there is a bigger picture behind my condition(s). I should say that I have no medical insurance and I have accrued over a half million dollars in medical bills. Since I have no insurance, I am a patient at a University Hospital where all/most uninsured people in my city go for medical care. Only two times in over two years has anyone expressed a belief that I have an undiagnosed causation behind my symptoms and those two people were both interns who were promptly censored by the attending physicians!

This began in January of 2005 with a steadily worsening pain in my left leg. On the third day of uninterrupted pain it approached an unbearable degree, I was unable to go to work, and I became convinced that it wasn't going to dissipate of its own accord. I went to the ER at the University Hospital and was diagnosed with a blood clot. The clot puzzled the doctors since I had not been on any 12 hour plane rides or cross-country car rides, I was only 34 years old, and was physically active on a consistent basis. I was treated for the clot with two different medications.

Six months later, I began to have syncope episodes which occurred at the rate of about 1 a month. It wasn't until the third episode that I became concerned and started going to the emergency room. After my fifth syncope and my third visit to the ER, I was told very nonchalantly by an apparently disinterested intern that I was having "panic attacks." I immediately questioned this diagnosis and was a bit indignant at the manner in which I was told as the man seemed to be fixing his attention elsewhere while he informed me of the diagnosis. I was not experiencing any fight-or-flight feelings, no sweating, and no psychological discomfort before passing out. It was simply a matter of being conscious one second and the next thing I knew I was coming to in a total cloud of confusion.

The very next incident, December 22nd of 2005, had me fall from a standing position. I am 6'3" tall and I landed on my forehead with the full falling weight of 220 lbs. I was unconscious for three days and spent almost 30 days of late December and January 2006 in the hospital. During that time I had countless tests, saw six different specialists, and developed almost ten blood clots from my extended time in the hospital bed.

Since February of 2006 I have had a head surgery to remove dried blood from the inside of my skull, I have had an ablation to keep my heart from racing to more than 200 b/p/m in the snap of a finger (this being the actual cause of my syncope), and was given a pacemaker due to being one of the lucky (haha) 5% of patients whose heart reacts adversely to an ablation and slows down. My heart stopped for 10 seconds in April 2006 while I lay in the ER after my seventh and final syncope. I have also been indefinitely prescribed Coumadin due to the diagnosis of a blood condition called Lupus anticoagulation disorder which was the factor in my blood clotting "talent" (haha- sorry trying to keep a sense of humor about all of this.)

Since being given the pacemaker I have not had any syncope episodes. Nor have I had any blood clots since being under the watchful eye of the Coumadin Clinic and having my INR measured on a regular periodic basis.

However, I have not been able to get my primary care physician at the hospital to take my other complaints seriously. This grew to such a frustrating level that I requested a new PCP. Here is an excerpt of an email I sent to a good friend in September 2006:

"It seems that University Hospital, the doctors, all think I am healthy- bodily healthy. Yet I am chronically tired, I have strange muscle soreness, daylight hurts my eyes, I have acne or rashes on my back, head, and face for the first time in years, there is a ringing in my ears, my feet burn, I can only read a few pages of my books without being mentally tired, my hands and feet tingle often when I am sitting down, and I keep thinking that I am going to attack my latest writing project the way I have always attacked writing projects but it all seems so burdensome. My mind is constantly drawn to consider the visual hallucinations I was experiencing during the time I was off of my anti-depressant and what that means with regards to how I would be in a natural state.
It becomes overwhelming to continue to voice these issues at the hospital when they seem convinced that I am "recovered." I don't want to be dependent or to appear to be prolonging all of what I am experiencing but I feel accused of doing just that. I would trade all that I have to be as I was a year ago."

Since that email was sent seven months ago: I have developed a consistent pain in my toes which had previously been periodic; I have cramps in my calves each and every morning when I wake up; my hands and feet tingle whenever I sit even a few minutes and they are prone to falling asleep whenever I sit for extended periods; my ankles are swollen and full of vericose veins, and I get lightheaded very frequently when standing up.


Over a year ago, I complained to my first PCP about a pain in my right hip where my leg meets my torso. He discarded the pain as he did almost all of my concerns (he told me in the middle months of 2006 that the pain in my toes that is still there "will go away"- seriously). Now a year later, I visited the ER last week due to the sharp and sometimes violent pain which has consistently increased in my hip and they tell me that I have an extremely rare condition called "femoral acetabular impingement syndrome" in which the hip socket and the femur bone are mis-sized for each other. Now I get to see the one specialist I had managed to dodge at the Physician's Associate Care Building- the orthopedic surgeon! That means the entire list of doctors in my drama now includes: neurologist, neurosurgeon, cardiologist, psychiatrist, psychologist, pharmacologist, primary care physician, hematologist, and the aforementioned and forthcoming orthopedic surgeon.

In addition to the already noted symptoms, I am having muscle aches in both legs and my right arm. (Hurray for the left arm!) I am having chest pains which feel like a dull heartburn but it is more pervasive in location and runs beneath both breasts and down to the bottom of my sternum. I have had a headache now for over a month. Finally, in the last week I have begun to have a sharp pain in my upper right abdomen where the bottom on my liver or my gall bladder is located.

Due to the Lupus anticoagulation blood disorder, I have read several articles on Lupus and have matched several of my symptoms to this systemic disease. It is also widely recognized as a very difficult diagnosis due to the fluctuations in, and pervasive nature of, the symptoms. I am resisting self-diagnosis but, as I said, the doctors that I am seeing continue to tell me that each roadblock in my path to recovery is its own condition. But what are the chances that I should have three unrelated and "very rare" medical conditions all strike within the same 24 month period? Not to mention that the condition behind complaints I verbalized over a year ago were consciously ignored or dismissed and, now, the level of damage and subsequent solution has been maximized. I may end up having to have hip replacement or some other major surgery to an area that, if addressed a year ago, may have been dealt with in a less traumatic fashion...

Any advice or help from someone with knowledge of Lupus or any other malady that sounds like it might include the totality of what I'm experiencing would be very much appreciated.



Symptoms at a glance:
swollen ankles
Lupus anticoagulation blood disorder
calf cramps

pervasive muscle pain
constant head ache
chest constriction/pain
sharp pain near liver/gall blader

lightheadedness at moment of standing up

heart arrythmia/syncope
siezure (most likely from head injury and bleeding in brain)
large skin rash on front left calf
tingling hands and fingers
dull pain in toes
hands and feet fall asleep after long periods of sitting (very aggravated sitting for movies in cool theatres or in air-conditioned coffee houses)
femoral acetabular impingement syndrome

(I think that covers them all.)

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14 Replies:

  • what a clever screenname!!. Has Chronic Fatigue Syndrome been considered or ruled out?Google symptom checkersenter symptoms see where it leadsRead thread titled CFS/ME/Autoimmune by Eatafruit78there is helpful information there on how to treat these things, if that's what it turns out to be.
    Anonymous 42789 Replies Flag this Response
  • I appreciate the shout out about my screen name. I probably thought about it too long but when I came up with it I knew it was the one (haha). I haven't looked into anything besides Lupus and that's just because of the Lupus anitcoagulation blood disorder. I'll read up on chronic fatique and check out the thread you suggested. It's a shame that I should have to be doing this at all because I feel the knowledge and time has been spent on my case at the hospital but it seems to be will power, true concern, and culpability that is missing. I mean, if your going to spend 1000 hours working on something to do it right or a 1000 hours working on something do it wrong, which one of the two choices seems like the logical alternative? I welcome more feedback from anyone with an insight. I think I've got a long way to go to get to the other side of these deep waters...
    Anonymous 42789 Replies Flag this Response
  • Lupus can certainly fit the symptoms you describe. A rheumatologist is the right specialist for this condition. They will know what tests to administer, such as anti-DNA antibodies, anti-ANA antibodies etc. as well as some other tests that can support a diagnosis of lupus. I'm not sure if you're male or female, but the ratio is 9:1 (female:male) for lupus. Good luck to you.
    Anonymous 42789 Replies
    • September 11, 2007
    • 04:45 PM
    • 0
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  • pretibial myxedema? Skin lesions or areas of nonpitting edema appear on the anterior or lateral aspects of the legs. The tibia is the shin bone.
    rad-skw 1605 Replies
    • September 13, 2007
    • 10:20 AM
    • 0
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  • What, at first, seemed like a separate and random occurrence of symptoms has become too prolonged after symptom-specific "treatment" and too consistent to be considered separate and random any longer. steadily worsening pain in my left leg. The clot puzzled the doctors since I had not been on any 12 hour plane rides or cross-country car rides, I was only 34 years old, and was physically active on a consistent basis. Six months later, I began to have syncope episodes which occurred at the rate of about 1 a month. I was told very nonchalantly by an apparently disinterested intern that I was having "panic attacks." I immediately questioned this diagnosis It was simply a matter of being conscious one second and the next thing I knew I was coming to in a total cloud of confusion. I have had an ablation to keep my heart from racing to more than 200 b/p/m in the snap of a finger (this being the actual cause of my syncope), I have also been indefinitely prescribed Coumadin due to the diagnosis of a blood condition called Lupus anticoagulation disorder Since being given the pacemaker I have not had any syncope episodes. Nor have I had any blood clots since being under the watchful eye of the Coumadin Clinic and having my INR measured on a regular periodic basis. However, I have not been able to get my primary care physician at the hospital to take my other complaints seriously. Yet I am chronically tired, I have strange muscle soreness, daylight hurts my eyes, I have acne or rashes on my back, head, and face for the first time in years, there is a ringing in my ears, my feet burn, I can only read a few pages of my books without being mentally tired, my hands and feet tingle often when I am sitting down, and I keep thinking that I am going to attack my latest writing project the way I have always attacked writing projects but it all seems so burdensome. My mind is constantly drawn to consider the visual hallucinations I was experiencing during the time I was off of my anti-depressant and what that means with regards to how I would be in a natural state. It becomes overwhelming to continue to voice these issues at the hospital when they seem convinced that I am "recovered." I have developed a consistent pain in my toes which had previously been periodic; I have cramps in my calves each and every morning when I wake up; my hands and feet tingle whenever I sit even a few minutes and they are prone to falling asleep whenever I sit for extended periods; my ankles are swollen and full of vericose veins, and I get lightheaded very frequently when standing up. Over a year ago, I complained to my first PCP about a pain in my right hip where my leg meets my torso. Now a year later, I visited the ER last week due to the sharp and sometimes violent pain which has consistently increased in my hip and they tell me that I have an extremely rare condition called "femoral acetabular impingement syndrome" in which the hip socket and the femur bone are mis-sized for each other. I am having muscle aches in both legs and my right arm. I am having chest pains which feel like a dull heartburn but it is more pervasive in location and runs beneath both breasts and down to the bottom of my sternum. I have had a headache now for over a month. Finally, in the last week I have begun to have a sharp pain in my upper right abdomen where the bottom on my liver or my gall bladder is located. Due to the Lupus anticoagulation blood disorder, I have read several articles on Lupus and have matched several of my symptoms to this systemic disease. Any advice or help from someone with knowledge of Lupus or any other malady that sounds like it might include the totality of what I'm experiencing would be very much appreciated.Symptoms at a glance:swollen anklesLupus anticoagulation blood disordercalf crampspervasive muscle painconstant head achechest constriction/painsharp pain near liver/gall bladerlightheadedness at moment of standing upheart arrythmia/syncopesiezure (most likely from head injury and bleeding in brain)large skin rash on front left calftingling hands and fingersdull pain in toeshands and feet fall asleep after long periods of sitting (very aggravated sitting for movies in cool theatres or in air-conditioned coffee houses)femoral acetabular impingement syndrome(I think that covers them all.)Wow! I am so sorry for all you've gone through. I excerpted from your post what jumped out at me. Especially what struck me, though your case is far more serious than mine, is your hip pain. I have pain in my iliac crest that no one really has figured out. So, you are 34 and they are just now finding out that your hip ball and socket do not match? That seems a little strange to me.I have the chest pan you describe, but it is almost in betweeen the ribs, like in the cartilage. Costochondritis is what the Dr.'s told me. And yes, that "describes" the pain very well.....in that specific area.I have had tingling in my hands and feet as well as what I called mental confusion. My PCP tested my B12 and it was very low. Please get yours tested. There is a thread about B12 deficiency on this site, please look it up.I am curious how they diagnosed your lupus. Do you have the blood work with the results?Have you been checked for Orthostatic hypotension? Your blood pressure changes dramatically upon rising from a sitting position.Do you have the urge to lie down, and feel better when supine?There is a soccer player, Michelle Akers that was diagnosed with Chronic Fatigue Syndrome. You should read her story, you have many of her symptoms especially that of the syncope/ or it seems orthostatic hypotension.My feeling is, due to your symptoms, if you did not start out with CFS, otherwise referrred to CFIDS or ME (Myalgic Encephalomyeolitis - called this in the UK).....you do now!!!!!CFS also has a "coagulation defect". If you did not test for the specific markers for lupus, then you may have received diagnosis of this based on a very good guess, but lupus does not fit it all.In addition to perhaps low Vitamin B12 (a very serious condition), it sounds to me as if your thyroid is out of whack. The coldness you feel, skin symptoms. Thyroid is basically, skin, teeth, bones, hair. Is your tongue swollen? Do you have the impression of your teeth on the sides of your tongue?Your condition is very serious, and I would not presume to guess lightly. CFS is a terrible conditon that can lead to all you are feeling. Usually it starts with a trauma of some kind, be it say a death or terrible experience.....to the more physical....a terrible bout of the flu, or even plain physical trauma such as a car accident. Recovery from that never happens, leaves you open to other things like infection. You do not mention any infection, though. CFS can lead to a coagulation defect, messes with your hormones, especially thyroid and hypothalamus. The vicious cycle is best described here:http://www.immunesupport.com/library/showarticle.cfm/id/4532/searchtext/coagulation%20defect/.Also, you seem to have symptoms of Fibromyalgia FM. This, in my opinion is on the same spectrum as CFS. I bet you have both. Do you take a lot of tylenol? At least have your Vitamin B12 checked out (also have homocystein, and urine Methylmalonic acid and Folate tested). Rule out iron anemia. Get your thyroid checked! And don't just settle for the "TSH". Get the reverse T3, T4, etc. checked out. Get evaluated for orthostatic hypotension, though going through all of the heart stuff you've gone through, I wonder if this was ruled out.CFS/FM is a vicious cycle. It is illustrated here in a chart: http://www.immunesupport.com/library/images/7856_chartLarge.gif. The other thing that strikes me, is that Dr.'s you "complain" of your symptoms, too, don't seem too interested. CFS is a very underestimated syndrome in its effects on patients. It is difficult to understand, and most Dr.'s do not think in those terms, sorry to say. It is used as a garbage bag diagnosis as is depression. At least have the things I mentioned ruled out. The excaserbating event for you could have been the "bump" on the head and you also have lupus. Though....I would find out how that was diagnosed and if you tested positive for those specific tests.All the best to you,Val
    Anonymous 42789 Replies
    • September 14, 2007
    • 11:06 AM
    • 0
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  • I, myself suffer from CFS and Fibromyalgia. The only help I found was NAET/Bioset therapy. The symptoms of these diseases are devistating, overwhelming and debilitating. I know, I was all three. Someone in this forum suggested this therapy and I went. I am recovered from most symptoms. My doctor is astounded as well. check it out...it works. Best regards, mommy cat:)
    mommy cat 1654 Replies
    • September 15, 2007
    • 00:08 AM
    • 0
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  • I have been going through some of the symptoms. Mine have only been going on for about 2 months. Have they ruled out Polycythemia Vera? That is what my doctor thinks I have. I am waiting for test results. That was after a month and a half of wasting time with different specialists. Actually now that I have a doctor who is trying to help, I think it has been going on a lot longer, they have just been calling it other things. I am only 30, and having a doctor take me seriously, has been a big problem for me. They wanted to blow me off because of my age. I have know there is an underlying cause to everything that I have been going through. They are really quick to say it is "psychological". I hope this will help.
    Anonymous 42789 Replies
    • September 17, 2007
    • 11:11 AM
    • 0
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  • My ex-husband had many of the same problems. He also tested positive for the lupus factor. After two years and countless doctors, he finally tested positive for lupus. His symptoms started out with 5 blood clots in one leg and then followed by an episode of pericarditis. Since, he worked in the health field, it made it even more frustrating trying to find a diagnosis. I felt like the very doctors he worked with would let him die, before they found out what was wrong with him. In addition to a rheumatologist he also sees an oncologist and now a nephrologist for kidney failure. He has SLE. I know its frustrating, but you do need to DEMAND not ask to be tested for lupus. I would also suggest being tested for RA. RA & lupus are both auto-immune disorders. The two together could explain your problems.
    Anonymous 42789 Replies
    • September 18, 2007
    • 01:52 AM
    • 0
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  • Acute symptomatic pulmonary histoplasmosis. This form of histoplasmosis tends to occur in otherwise healthy people who have had intense exposure to H. capsulatum. Because the severity of the disease depends on the number of fungus spores inhaled, reactions may range from a brief period of not feeling well to serious illness. Typical signs and symptoms include fever, headache, dry cough, chills, chest pain, weight loss and sweats. In some cases, arthritis or pericarditis — an inflammation of the sac that surrounds the heart — may develop weeks or months after the initial infection. These problems aren't a sign that the infection has spread outside your lungs. Instead, they develop because your immune system responds to the fungus with an unusual amount of inflammation. Arthritis is much more likely to occur in women than in men and is often accompanied by erythema nodosum, a skin rash usually found on the shins.
    rad-skw 1605 Replies
    • September 19, 2007
    • 09:55 AM
    • 0
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  • I have had alot of your same symptoms. I had to see four different rheumatologists before receiving treatment. One rheumatologist suggested my symptoms were psychogenic. You have to press on.What really helped me was having a PCP who took me seriously. I advocated for myself, but it was really because of him that I found help. Part of the reason the doctor took me seriously is, I think, because he's been seeing my husband for 20 years. I had only seen him a few times. Do you know anyone who can refer to a good doctor? The referral itself may be what convinces the doctor that you are not a crackpot.Alot of people with lupus have had their gall bladder out. There is no "scientific" correlation that I know of, but anecdotal evidence suggests a connection. That might account for your upper right quadrant pain. I also had problems with my hip socket. Both of my hips were compacted at one point (leg bone stuck in hip socket). My feet hurt for two years. The tightness in your calves may be alleviated by stretching exercises - toes down and then all the way back (towards the calf) as far as you can go, and then down again. Look up "Plantar Fasciitis" and do the exercises for that condition. That might loosen your calves.My hands (last three fingers) also go numb, tingle, fall asleep especially at night. I have a fair bit of shoulder pain, but it moves and sometimes is located at the hip. I have also had swollen ankles. Several blood abnormalities.Exhaustion, inability to focus and anxiety. I am on plaquenil which is treatment for both SLE (mild) and RA. And also Lyrica which is for Fibromyalgia. My Rheumy said he thinks everyone who has a chronic pain condition ends up with fibro. Anyway, the meds have made a huge difference for me. One thing that made a big difference for me was not telling the doc my suspicions. With the first two rheumatologists I laid all my cards on the table and I TOLD THEM what I thought was going on. With the last two, I held my tongue in terms of my own theories and just detailed the symptoms.In my case it took 4 rheumys, a bone marrow biopsy, a full body CAT scan, and endoscopy (upper GI), a colonoscopy, ultrasound, and enough blood to keep Dracula alive until the return of ****s.Keep at them. Find a Doctor who will listen to you and advocate for you. Go to the website of Graham HUghes. He is a Lupus specialist in the UK. The blood clotting disorder (antiphospholipid syndrome) associated with Lupus is also called "Hughes Syndrome" because Graham HUghes discovered it. He has an "Alternative Criteria for Lupus" list (and alot of other helpful info) on his website. Do not give up.
    Anonymous 42789 Replies
    • November 3, 2007
    • 03:27 AM
    • 0
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  • sounds like lyme disease to me. i had all your symptoms - no blood clots, but thickened blood. after 10 months, i was finally diagnosed. by then, my symptoms were out of control. please get tested at igenex labs.
    Anonymous 42789 Replies Flag this Response
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  • Contact NIH Rhumatology Department
    Anonymous 42789 Replies Flag this Response
  • Im thinking much the same as the other posters here.. Lupus .. or possibly chronic fatigue syndrome. I thought Val's post was great as she mentioned the associated issues which i was going to mention as i think you may have too..eg Costochondritis and Orthostatic hypotension. And as she said CFS is also associated with a coagulation defect. In fact studies have shown that 75%+ of CFS have some kind of coagulation defect eg antiphospholidid, hughs syndrome). Go to the website of Graham HUghes. He is a Lupus specialist in the UK. The blood clotting disorder (antiphospholipid syndrome) associated with Lupus is also called "Hughes Syndrome" because Graham HUghes discovered it. http://www.hemex.com/publications/cfs_model.php (link to some info on antiphospholid syndrome in CFS and http://www.anapsid.org/cnd/diffdx/hypercoagulation.html
    taniaaust1 2267 Replies Flag this Response
  • I am wondering about the same question. 34 year old female. After birth of first and second child had horrible cramping and diarrhea. Difficult pregnancies with protein in urine, and A LOT of swelling, migraines, and vision impairments. Three different doctors said symptoms not related to pregnancies. During first pregnancy diagnosed with hypothyroidism, and treated successfully. For years many symptoms, off and on, and now far worse, seems childbirth has brought out symptoms more. Symptoms include tingling, numb hands and feet, feet that turn purple, pain in muscle and joints, fatigue moderate to extreme, vision blurriness one or both eyes off and on and worse when fatigued, low grade fever without colds, glands swollen off and on, sore throat, difficult swallowing, pain in abdomen, pain in upper left side, many tender spots on body, pain when touched, back pain, cramps and muscle spasms, dizziness, nausea, diarrhea and constipation, and vomiting. I also have difficulty concentrating, and forgetfulness. Fatty foods make me violently ill. I was recently diagnosed with a mild case of Crohn's, and Fibromyalgia, and hiatal hernia. My blood work shows eosinophils in blood, and tested positive for ANA, but it wasn't terribly high. I have photosensitivity, get rashes in sun, and my hair is falling out, and it isn't due to my thyroid as the levels are finally controlled by medication. Lupus??
    Anonymous 42789 Replies
    • January 6, 2009
    • 10:28 PM
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