View Full Version : question

05-19-2009, 09:16 AM
for my introduction please see NEW from BC Canada. I have not been diagnosed as of yet.
My blood tests are in. Dr.'s office called and said, "if your not having symptoms you do not need to come in, if you are still experiencing symptoms the dr. would like to see you." WTH? So, I made an appt for today to find out whats going on.

latest symtpoms from the weekend.
Visiting with my mother on sunday, I felt an "ache" on the palm of my hand. Look down, there is suddenly a red circle, just a little one, that is not raised. 10 min later, ANOTHER feeling of 'awareness" that something is developing. Run to the bathroom, there is another little red circle on my nose. No biggy, they are really faded to almost gone now.

Yesterday, I woke up and could barely walk ALL day. My ankles hurt so bad. I dont know if its from wearing sandals the day before or not. All I know is that they ached so bad when I tried to walk. It would seem to be less achy as I walked, but if I sat for awhile it was REALLY bad when I would go to walk again. Today, its almost gone. WEird spot though. I cant pinpoint the ache. More towards the top of my foot (almost seemed to be coming from UNDER the ankle bone.) Hurt to flex upward or downward.

Anyway, what do you all think of what the dr said? why would he ONLY want to see me if I still ahve symptoms? maybe it means test results were fine and wants to do more testing?

05-19-2009, 10:19 AM
hi grullagirl,

l love your picture, my cousin rides bulls, and even holds some rodeo camps for kids.

i have never had a dr. to call and say i could come in if still having symptoms. that is truly strange. What time is your appointment? Be sure and update us when you get back.

Lupus symptoms are intermittent...this means they come and go and change from one location in our body to another. So, it is possible taht you don't have the same symptoms that you had last week.

Remember to think back and list any symptoms that you have experienced over your life....get your mom to help you remember. Take these to the dr. with you....if your gut instinct tells you that this dr. is not taking an active interest in your situation, it might be time to find another dr.

My hands and feet get red patches, swollen blood veins, and ache pretty badly whenever i am having a flare. When i showed my first dr. these physical changes, his response was "my veins stick out too". He just stared at my feet and shrugged his shoulders....i quickly found another dr., and then i found another and my present rheumy is wonderful.

My ankles ache almost every day. I describe the location as around my ankle, but towards the top of my foot....and sometimes it really hurst to walk.

good luck at the dr......be your own advocate, and hopefully your dr. will treat you with the respect that you deserve.

05-19-2009, 10:32 AM
I think he and_____ and you need a new one. he should of first said your test came back blah blah, how do you feel. so call office ask for a copy of test results and than go from there with a new doctor.:yes:

05-19-2009, 10:46 AM
I will definatley let you all know what happens. I am very curious to see what he has to say. As far as asking my mother...... well, I am 39 and have not lived with her in 24 years, so she wont be much help there! lol.

05-19-2009, 11:18 AM
Hi Grullagurl...

I think your doctor, is he a Rhuematologist or Primary?... either should run tests to rule in or rule out other diseases whether they are autoimmune or not.

Your ankle pain, could be Lupus arthritis related or Osteoarthritis arthritis...both would warrant treatment.

The key to managing Lupus is early detection and treatment...Lupus is such a mysterious disease..a disease with oodles of smaller signs and symptoms that are often overlooked or misinterpreted as a different disease or not regarded as being anything at all...leading to misdiagnosis.

I get the blank stare when I inform my Rheumatologist of new symptoms...like Okay, so what has that got to do with your Lupus. Gee, I thought you would know..I say to myself. Many of them are the symptoms we all talk about daily...we all get. Like red blotchy skin all over our body, turns white when depressed...night sweats...forgetfulness...low body temperature. I mentioned to him and got the stink eye.

I believe many Rheumatologist really don't understand Lupus either...

So, keep looking for your wellness and never think it is all in your head or that you are a hypochondriac.

The day is young...do something great for yourself...

Hugs..Be well, keep well.

05-19-2009, 12:11 PM
so far, just a primary. I plan on changing though. I have gone to him for years with various "symptoms" and he just poo-pahs them and sends me on my merry way. He was away last time, and a nice woman doctor is the one that ordered all the tests.

Another question: My mentrual cramps are getting worse and worse. I have sever back pain that feels like labour. Is this a symptom of lupus or totally unrelated?

I also just noticed I am a "not so newbie" HAHAHA

05-19-2009, 02:21 PM
hi Grullagirl!! I too chucked my old GP of 13yrs cuz i went through the SAME thing you did. She just kept POO POOing me away also. I got SICK of it, BYE BYE to her!!!! Good for you to for doing the same!!!

I want to say that your period situation is due to lupus. I TOO am going through the SAME thing as well. My PMS and periods are WORSE than EVER and my lower back is messed up anyways (a broken L5 and a worn away disc, grinding bone on bone) so it bothers my back and makes it EVEN THAT MUCH MORE painful:skeptical: Sorry you have to feel the pain of this disease:no: WE are here for YOU though, so dont EVER FEEL ALONE!!!!:cute:

05-20-2009, 08:17 AM
so, even though i have been having all these symptoms in the last month (including that on monday my hands swelled so bad that my fingers looked like sausages.), my blood tests are normal:shocked: ANA, Normal, Thyroid, Normal, Rhuematoid Arthritis, Normal, Iron, Normal. My doctor is running one more. I think he called it an E.C.L? and basically told me to go home and that he doesnt know whats going on... "come back in a month if you still experience symptoms...."

05-20-2009, 08:30 AM

Humm. I am wondering why he hasn't referred you to a Rheumatologist yet. A rheumatologist should know, tests are just part of the puzzle and clinical evidence..symptoms with common sense are the other parts...

One doesn't need to be positive in any test to have Lupus, as there is no one test...

ECL is Electrochemiluminescence (ECL),

Is he treating your symptoms...regardless of the tests.


05-20-2009, 09:03 AM
no, no treatment. But my symptoms seem to change constantly. the only one thing that has remained the same for over a month is one my fingers joints is super sore and has developed a "bump"

05-20-2009, 01:18 PM
Hi Grullagirl!!
Sorry you have not received a name or diagnosis to what you are going through. I hope you find out soon. I too had foot/ankle pain before I was diagnosed with extreme swelling. I wear a size 7 1/2 shoe and at the height of pain/swelling I couldn't get my feet into a size 9! I think a lot of times dr. want to see you when you are in pain to try to pin point what is going on and actually look at you. My doctor always looks at my hands/feet/arms etc. to see swelling or any kind of bumps/rashes that may be on me and then adjust my medications accordingly.

05-20-2009, 03:20 PM
Have you been tested for Rheumatoid Arthritis, Grullagirl?

Have you tried over the counter Motrin, Aleve or the like then for your joint pain?


05-20-2009, 03:44 PM
Have you been tested for Rheumatoid Arthritis, Grullagirl?

Have you tried over the counter Motrin, Aleve or the like then for your joint pain?


Yup, thats one of the tests that came back normal.. and yet, my finger joint is super sore today and the bump on it is getting BIGGER.... go figure... Do you happen to know what the E.C.L test is for? Dr. said to rule out inflammatory arthritis.....

As far as over the counter medicines.... I get migraines on a regular basis, and NOTHING works for me anymore, so I avoid taking pills as much as possible since I have to take a million during a headache...:hissyfit:

05-20-2009, 04:31 PM
Hi Grullagirl...

I'm wondering if you read my post in your introduction thread...I shared with you about my experience with the sore, red, swollen bumps near joints. I'll paste that section here, in case you missed it.

I've had the red, swollen bumps near a painful finger joint many times over the years...my doctor calls them Rheumatoid nodules and says they're caused by inflammation and irritation of the joint and are definitely something Lupus can cause. They can hang on for a few days or a week and then mysteriously disappear overnight. Do they feel warm and tender, and hurt more or sting when you touch them? Sometimes mine would itch also. I would sometimes ice mine for awhile to numb the pain for short term relief.

This sounds like exactly what you're describing. I had them many, many times over the years with Lupus...usually on my fingers near a joint or near my elbows. Even though they call them rheumatoid nodules, they are from Lupus, not rheumatoid arthritis. Mine never seemd to respond to any medications, they just ran their course and disappeared over time. When the actual bump finally disappeared, there would be a small red spot in that area for a few weeks and then it would disappear as well.

Hope this helps...

:cool2: Lori

05-20-2009, 06:16 PM

From my understanding as I read it...

ECL is a method and not an actual test, as they use this method in other tests, like for cancer tumors, thyroid and etc..it isn't a 'test'....

ECL is defined as Electrochemiluminescence or electrogenerated chemiluminescence (ECL) is a kind of luminescence produced during electrochemical reactions in solutions.

Example....Human T lymphotropic virus type I (HTLV-I) may be associated with some connective tissue autoimmune diseases, including systemic lupus erythematosus (SLE). To determine the relationship between HTLV-I infection and SLE, we examined the clinical manifestations of SLE patients with HTLV-I infection. Methods. Eighty-nine patients with SLE were screened for antibodies to HTLV-I by electrochemiluminescence immunoassay.

If your doctor just said ECL, then he didn't say what test he is ordering...

With migraines have you ever requested a prescription for a Triptans drug...like Imitrex? Ask, no one should suffer when there is help available.

Joint pain...try an ice bag as a home remedy. May help.

Be well, keep looking for your wellness.

05-20-2009, 06:47 PM
I think you need a rheumy. I hope you can find one better than mine. He he he !!!