View Full Version : Should I seek second opinion???
06-19-2008, 09:35 PM
I was tested about 4 months ago for lupus, my ana was through the roof. I do have a thyroid problem, so I went to Rheumy. My ANA yet again was through the roof...well, if you have lupus you know they test for lots of things, though the test for lupus sle came back very positive. He finds out I have Fibro and the thought of me having lupus goes out the window, that and I was tested years ago for my sleep issues with several sleep studies..he decides my physical ex. is for my sleep disorder that its not from the lupus...one visit I have the next he decides its not lupus. He takes me off the dico. antinflammatory and things get worse from there. My wrists, elbows, and hands hurt so bad I can't even put it into words. I feel like I'm going crazy...I feel like he thinks maybe things are made up...I don't know... My husbands is tiresd of me complaining day in and day out about how nmuch I hurt, how physically exhusted I am..How my headache never go away. :cry: Besides the severe memory loss and retention is...I can't remember simple things, I always feel confused. My speech is slured and I studder which I never did before. I just don't know what to do please any suggestions or words of wisdom. Thanks Sheila
06-20-2008, 02:30 AM
I am sorry to hear about what you are going through. It is often times very hard to diagnose Lupus. A good number of us in here had been very sick for a long long time, before a doctor would diagnose Lupus. You have to have at least 4 of the criteria in the list of symptoms for Lupus, before the doctors will even consider Lupus. There are a host of Auto-immune diseases that will cause an ANA titer. I will put the list that I found on the web that they look for when determining if you have Lupus.
Here is the list:
Exams and Tests
Lupus (systemic lupus erythematosus, or SLE) can be hard to recognize, sometimes taking weeks to years to diagnose. Lupus affects different people in different ways, and it can take time to develop the symptoms that suggest this disease. Your health professional will record your medical history and perform a physical examination, checking for the presence of certain criteria to help diagnose lupus. These criteria are used to separate lupus from other similar diseases. A person with 4 of these 11 conditions can be classified as having lupus.1
Classification criteria for systemic lupus erythematosus:1
Butterfly (malar) rash on cheeks
Rash on face, arms, neck, torso (discoid rash)
Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)
Mouth or nasal sores (ulcers), usually painless
Joint swelling, stiffness, pain involving 2 or more joints (arthritis)
Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis)
Abnormalities in urine (test results show increased protein in the urine or clumps of red blood cells or kidney cells, called cell casts, in the urine)
Nervous system problems, such as seizures or psychosis, without known cause
Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells
Positive antinuclear antibody (ANA) test
Laboratory tests indicating increased autoimmune activity
I hope that this helps and if you have at least 4 of these going on I would definitely seek out a second opinion. Good luck and I hope that you can find some answers.
I can't add much to the excellent information Kathy has provided. I will say that it's your right to seek a second, even a third opinion. Just yesterday I was talking to a new member here about some of my symptoms. I was diagnosed with Systemic Lupus in 2004 at the age of 36. Your symptoms are very similar to mine. Most notably, the mental confusion, and forgetting "the simple things". I don't like to tell people specifically what they should do in a certain situation. That being said, I don't think seeking a second opinion could hurt anything. If you are worried about possibly offending your current Dr, don't. Unfortunately, there is a real ignorance on the part of health care professionals when it comes to autoimmune diseases, especially Lupus. My diagnosis was rather quick, and clear cut compared to most, and I still sought a second opinion just to be absolutely sure. Let us know how things go for you Sheila. Don't be afraid to talk, there are alot of good listeners here. Welcome.
06-20-2008, 07:20 AM
You are your own best advocate. Be firm with your doctor and tell him what you told us and request a second opinion and a review of all your tests etc by the current guy. Sit there and don't move until he agrees to look into it further. I think most docs just make the easiest diagnosis and shephard you out the door thinking they've done their job ...not. Good luck.
06-20-2008, 07:31 AM
Hi Shelia...a little info on ANA and FMS.
First, as Rob mentioned..seek a second, third opinion..it is not only your right, but something you should do...
Hope the following helps
An ANA test doesn't detemine FMS. An antinuclear antibodies (ANA) test is done to help identify problems with the immune system, such as....or rule in or out other diseases...some, not all I have listed..such as
Also regarding the ANA test, different serum dilutions can produce varying nuclear patterns, and one pattern may obscure and prevent the detection of other patterns when several antibodies are present. Nuclear patterns aren’t specific or sensitive. Therefore, no single pattern denotes a single disease, and several diseases may produce a particular pattern. High titers (greater than 1:640) are relevant and patients without a specific diagnosis should be followed for the emergence of a possible illness, although such high titers can occur in the absence of disease. Titers higher than 1:80 are seen in 13 percent of the normal population and titers greater than 1:320 are seen in 3 percent of the normal population.
A positive ANA doesn't mean Lupus, nor does a negative mean not. 3 - 5% of the people can have a negative ANA and still have Lupus, just as you can have a positive ANA and not have Lupus.
Kathy mentioned the criteria for diagnosing Lupus. Without a diagnose specific, suspect... they can treat the symptoms.
There is no reliably tested laboratory or imaging procedure that one performs to determine the presence of fibromyalgia. Clinicians therefore rely on a history, physical, and the ACR diagnostic criteria. If laboratory or X-ray studies are performed, it is usually done to make sure that other reasons for inflammation are not present. For example, one could have systemic lupus erythromatosis, an inflammatory joint disease, along with fibromyalgia.
The ACR criteria states that fibromyalgia is present when there is
1) body or joint pain above and below the waist, and on the right and left side of the
2) axial pain (neck, back or middle chest pain), and
3) 11 out of 18 possible tender points. Tender points are defined by pain perceived at 18 specific locations on the body when mild to moderate pressure is applied that is usually not experienced as painful in a
The locations of 9 tender points, one on both sides of the body, follow:
1 Occipitus (back of head): where one or more of these muscles insert: trapezius, sternocleidomastoid, splenius capitus, and semispinalis capitus.
2. Lower Neck on the Sides: at the front aspect of the spaces between the transverse processes of C5-C7.
3. Trapezius Muscle: at the midpoint of the upper border.
4. Supraspinatus Muscle: above the scapular spine near the medial border.
5. Second rib: lateral to the second costochondral junctions. This is often found when associated costochondritis (inflammation of the rib and sternum joints) is present.
6. Lateral epicondyle (just below the outer side of the elbow): 3/4 inches below the lateral epicondyle.
7. Gluteal: at the upper outer quadrant of the buttocks at the anterior edge of the gluteus maximus muscle.
8. Greater trochanter (outer side of the hip): just behind the greater trochanteric prominence.
9. Inner Knee: at the inner knee fat pad just above the joint line.
Nonetheless, despite these criteria, clinicians can often define the presence of fibromyalgia when these tender points are not present.
Associated conditions are then helpful in making the diagnosis. When chronic fatigue, sleep disorders, migraine headaches, memory difficulties, clumsiness, costochondritis, irritable bowel syndrome, painful tailbone (coccydynia), low back pain, neck pain, interstitial cystitis, restless leg
syndrome, and endometriosis are present with some, but not all of the other ACR criteria, fibromyalgia may be diagnosed by some clinicians. In this setting, where there is either early or incomplete fibromyalgia, as in the case of a chronic regional pain syndrome when only certain quadrants of the body is affected by pain, the diagnosis of fibromyalgia is difficult to conclusively determine.
Fibromyalgia at this point can overlap with signs
of symptoms of other conditions that have similar manifestations. These can include depression and anxiety, which are more common in the general population than fibromyalgia, and post-traumatic stress disorder or chronic fatigue syndrome that may be less common. Often times the practicing clinician will chose to treat for fibromyalgia, though it can not be conclusively proven that it is present. The same treatment may help
any overlap conditions as well.
When is your next appointment? If none schedule, call your Primary and tell him of your pains, symptoms he may treat them and should be able to refer you to another RheumBA....
Be your own advocate, read learn about the disease you suspect...RA, SLE, FMS so you can understand and be prepared to ask questions. Sometimes taking control by learning can make us feel better...
Try to relax your mind, stress aggravates pain and increases the diseases activity......
What medicines are you on? Flexeril? Elavil? Mobic? Lortab? Usually prescribed for FMS...
Regarding your husband, maybe words like this may help....I know you are tired of hearing me complain, I am tired of being in pain...I am just scared, not knowing.
Confused or did I help? Hope it was the latter...Keep looking for your wellness. You are not crazy. You just haven't found someone to diagnose you properly.
06-20-2008, 10:06 AM
Does he not know that it is quite possible, and often probable, that we can have Lupus as well as an overlapping illness (such as Fibromyalgia). I have Lupus and Fibromyalgia. I know that my sleep disorder is from Fibromyalgia, but the inflammation problems are from Lupus.
Systemic lupus erythematosus (SLE) belongs to a family of related autoimmune rheumatic disorders, including dermatomyositis, Sjogren's Syndrome, scleroderma, polymyositis, mixed connective tissue disease, and rheumatoid arthritis. All of these disorders are capable of affecting multiple organs, and they are all associated with a variety of autoantibodies that rise and fall depending on the clinical disease pattern. Many people with lupus also have symptoms characteristic of one or more of the other connective tissue diseases.
Lupus and fibromyalgia are two common rheumatic conditions.There are specific symptoms, distinguishing characteristics, as well as overlapping symptoms associated with lupus and fibromyalgia which determine the diagnosis and course of treatment.is a chronic, inflammatory, autoimmune disease. Lupus can affect the joints, skin, kidneys, lungs, heart, nervous system and other organs of the body. Lupus symptoms often resemble symptoms associated with other types of arthritis, making lupus difficult to diagnose. Fibromyalgia is a chronic condition characterized by body aches, widespread pain, sleep problems, extreme fatigue, depression, anxiety, and other symptoms, in combination with tenderness of specific areas (muscles and tender points) on the body. Fibromyalgia is a type of soft tissue or muscular rheumatism and does not cause inflammation, joint damage or deformities.
Recent studies have shown that approximately one-third of patients with lupus also have fibromyalgia. It is important to understand that the fibromyalgia usually develops after the lupus has become well established. It is extremely rare for a fibromyalgia patient to later develop lupus. This can be a true statement in your case, as you were first diagnosed with Lupus and now your doctor feels that you have Fibromyalgia.
In order to diagnose fibromyalgia, your doctor should take a careful history and perform an examination which focuses on specific local areas of tenderness. These locations are called tender points. As many of the symptoms of fibromyalgia are similar to symptoms of lupus, there is a natural concern that the symptoms of a fibromyalgia flare could be the underlying lupus picking up steam. Lupus patients who are undergoing a flare have other findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. Here is the important thing to note, NONE of these findings are a feature of fibromyalgia -- thus the distinction between a flare of fibromyalgia and a flare of lupus should not be too difficult if the problem is approached systematically. The American College of Rheumatology has developed criteria for diagnosing lupus - just as they have for diagnosing fibromyalgia.
Perhaps he needs to be educated and, if not, you might be well advised to seek a second opinion. I hope that this has been helpful to you.
Peace and Blessings
06-21-2008, 02:02 PM
Thanks for all your help and suggestions. I have been having problems with all these issues for 5-6 years. I am currently taking lyrica, soma, vicodine, diclo.. and several others for my allergies and ansomnia which like I said have had for years and for that I am taking ambien., it's the only thing that works and with that I still am lucky to sleep 6+ hours...tired of being tired. tired of hurting and tired of complaining....My next appointment isn't untill like the end of july. I have been in contact with his nurse just about every other week...telling her what is and isn't working...I haven't yet told him about the studdering and the slurring of my words, my husband always asks me if I' medicated...and he is not the only one co-workers are noticing. I just can't think straight, simple things hae become so difficult...Just feel lost...because I so have 6 out of the list and have for years which is why my family doc sent me to him. I haven't beeen able to play softball for the last 2 years just batting once can send me into a down word spiral..sorry to complain and go on and on.
06-22-2008, 08:14 AM
I am so sorry that you are suffering so much. Many of us have the memory problems, but the stuttering and slurred speech are issues that you should, immediately, contact your doctor about. They could possibly be the signs of something needing immediate attention.
Do contact your doctor and let us know how you are doing.
Peace and Blessings
06-22-2008, 11:50 AM
Sheila, I hope you'll follow all of the great advice you've gotten from all these caring folks. DO have the slurred speech and stuttering checked our soon. I'm a bit slow in catching up on posts lately, but when I read that I heard some alarm bells - Saysusie advises you well! See your doc about that.
And YES, YES, YES get a second opinion - and a third and a fourth, if you don't think you're getting the care you need. Diagnosis is tough - and some doctors just don't have the background, or are in too much of a hurry to send you on your way. Be insistent - don't give up. You need medical help, and you deserve to have someone who really listens.
Let us know what you learn, Sheila.
06-24-2008, 10:50 PM
dont ever let anyone make you feel that the pain is in your head. its happened to me, as im sure to the majority of us, our closest friends and family think were exaggerating or that it may not even exist. i agree with mnjodette, get a second opinion! i dont understand how your doctor had all those tests that demonstrated lupus and threw it out the window once he diagnosed you with fibromyalgia.
(sorry if i seem a little heated over this issue. this is a major sore spot for me. )
just remember to trust what you feel. dont let other people sway your thoughts on something. maybe you could find someone else to go to your appointment with you so they can back you 100% if your doctor starts pushing your symptoms in the mold he likes.
i really hope i could help!