Doctor is ignoring the symptoms or no?

Hi all. I feel I am going in circles with my doctor, which is frustrating.  Any advice is appreciated.  Here are the stats:

I am a 26 year old female. I came down with mono about 3 years ago, and since then have felt very ill and not quite right.  I experience these symptoms on a daily basis.  My symptoms are:

Joint pain
Joint redness/swelling
Joint stiffness
Muscle pain (intense and ALL the time)... especially in the legs
Nausea
Headaches
Rash across the face (but not raised or textured, just pink)
Fatigue (super exhausted all the time)

I experience these symptoms some of the time:
Tingling or numbness in my feet and hands
Dizziness
Pleurisy
Inflammation around the breastbone (painful)

I recently had some tests done... my ferritin came back very low, and also, my ANA was "greater than 1:40" and "speckled pattern".  

My doctor says the test results are not definitive enough, but I am in pain and feel HORRIBLE every day.  Please help.  :(

[SparrowBlue]

Anyone, please?

[MarisaV]

I'm sorry you're going through all this. Unfortunately, it can take quite a bit of time, effort, and a boat-load of frustration. getting a proper diagnosis and treatment. You need to be prepared for the long haul.

Lupus is diagnosed through a combination of tests, your symptoms, the doctor's clinical observations and experience, and by the exclusion of other possible causes (which can take quite a bit of time and effort, running all those tests, and seeing all those other specialists).

Your symptoms are consistent with Lupus, but they could easily be caused by some other disease.

Typically, when you have an elevated ANA, they like to see it at a higher level (say 1: 160 or higher. The higher the value, they more likely its indicative of something). Unfortunately, an elevated ANA is not specific for Lupus, and could just be an indicator of a simple viral infection. Typically, they'll want to see both elevated ANA and elevated anti-dsDNA or anti-Sm antibodies.

I find it funny, that when I was first trying to figure out what was wrong with me, my ANA was consistently normal, and every doctor I visited said that proved, I did not have Lupus, and go see a psychiatrist.  Bunk!. My Rheumatologist even admitted it to me at my last appointment, that the ANA and anti-bodies fluctuate, and aren't consistently elevated unless something major is going on.

Ask your doctor for a Medrol pack, and see if that helps you any.

I don't know what else to tell you other than treat your symptoms as best you can, and keep trying.

Most doctors are cautious about diagnosing Lupus. Its been a catch-all diagnosis in the past, they don't want to subject to medications that might cause you more harm than good, and, if they diagnose you with Lupus (or even but the word in their notes) it will affect your ability to get insurance (and possibly employment).

I hope this helps some. Take care.

Mar

[katinker]

I am so sorry for all that you are going thru. I have had wierd symptoms for about 18 mos and not until I got a high ANA titer of 1:1280 did anyone take me seriously. I have been to so many specialists and finally will see a rheumatologist on the 9th of August. Have you seen a Rheumatologist and if not, I would ask your primary care Dr. for a referral. Good luck and I will say some prayers for you.

Kathleen

[thyroidian]

Hi.
Gosh you having been having it hard. I would say you definately need a referral to a good rheumatologist.
Who should run a whole panel off bloodwork, to try and pinpoint what is going on.

Your doctor shouldnt refuse you, because you are actually having some strong symptoms indicative off an auto-immune illness, and if he prolongs it for you, you will end up suffering many years unduly without the correct treatment.

I was in your shoes for many years, being fobbed off, for fun.
I took my own health into my own hands, and with-in three months i was fully diagnosed on the correct treatment for my illness.
If you are not happy with your doctor , then find a new one. Especially one that listens.

I would suggest seeing a good rheumatologist, for a full blood work up.

Nicola

[jeffmoz50]

WOW. just been reading through comments posted. I am new to internet, and forums, since reading i now know im not alone, had no idea lupus was this common. I was diagnsed about four years ago just before i got married but had a miriad of unexplaind symptoms for about five years prior to diagnosis. the first symptom i had was a deep red mark on my neck that took some explaining to my girlfriend at the time because it looked just like a love bite. Then an even larger one appeared on my waist about the size of a mans fist wich lasted for six months before dissapearing. at the time i was a builder and over a period of about four years i noticed that i was becoming increasingly more tired after work and during the working week, this feeling of fatigue and lethargy slowly crept up on me and began to rule my life, because i didnt have any energy left for family or social life. these symptoms were soon to be joined by others like aches and pains, joints and muscles and have got so much now that i had to give up work last year. it got to the stage that i could do a days work and would have to take three days off to recover as i was totally drained. even now a simple trip to the shops with my wife can see me wrecked for the rest of the day (completely worn out) thats the truth but i feel that people dont believe me and think im lying. I currently spend most of my time house bound because i now have a permanent red rash all around my neck and my forehead that is quite unsightly and im very consious of it. it never dissapears unless i use a protopic cream, but i only use it if i have to go somewhere special like a wedding or similar because it itches even more when i use it, so only use it when i really need to. the rash i have is also aggravated by ultra violet light so it doesnt necessarily have to be sunny, just normal day light  bothers me. I can only describe it as like a slug or snail needs to get out of the sun when uncovered, its not nice and i cant stand being in it even with sun block on. I dont know how forums work or even if what i write is visible to anyone, so if anybody can let me now it would be much appreciated. Jeff, fellow lupus friend.     ***@****

[Julie2473589]

according to the web site i was just looking at 1:40 in a positive test... maybe your dr needs to do some research...Find a new dr
Julie

[Julie2473589]

this was also on the website:
ANAs are found in patients who have various autoimmune diseases, but not only autoimmune diseases. ANAs can be found also in patients with infections, cancer, lung diseases, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, and in elderly people or people with a family history of rheumatic disease. ANAs are actually found in about 5% of the normal population.

Speckled - results from antibody directed against different nuclear antigens

A titer is determined by repeating the positive test with serial dilutions until the test yields a negative result. The last dilution which yields a positive result (fluorescence) is the titer which gets reported. For example, if a titer performed for a positive ANA test is:
1:10 positive
1:20 positive
1:40 positive
1:80 positive
1:160 positive
1:320 negative
julie