Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
I was referred to hematologist and
he ordered more tests because ANA-positive
and other blood work was abnormal
I called for resusts- no one called back
I have an appt with him on Tuesday
I have had so many blood tests and ct's ultasoud
also diabetes hypothyroid disc disease Ibs
diverticulitsis and take meds
I feel like something is wrong
he ordered more tests because ANA-positive
and other blood work was abnormal
I called for resusts- no one called back
I have an appt with him on Tuesday
I have had so many blood tests and ct's ultasoud
also diabetes hypothyroid disc disease Ibs
diverticulitsis and take meds
I feel like something is wrong
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I explained this on another question and got blasted, but I'd like to say this again:
A POSITVE ANA DOES NOT NECESSARILY MEAN YOU HAVE LUPUS!!!! It's just an antibody. Lots of people have it and have no problems at all. By itself it means very little. I am not trying to diminish your pain in any way so please don't take it that way. But you need to wait for more test results or more symptoms before jumping to any conclusions, okay?
The reason that it takes so long to diagnose lupus (on average 7 YEARS!) is that a patient needs to have 4 of the 11 criteria designated by the American College of Rheumatology. (A good explanation of the list can be found at http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus.) There is a reason that lupus is called "the great imitator". Many of the symptoms are vague like fatigue and joint pain.
By all means, if you feel that your doctor isn't doing enough either GO BACK to your doctor and TALK to him/her. Or get a second opinion. Even the best doctors can get tunnel vision and miss things. In my case, my rheumatologist couldn't figure out why I had new symptoms. He was so focused on the lupus that he didn't see that I had Adult Onset Stills' Disease. But being a GOOD doctor, he realized that he might be missing something, so HE SENT me to another doctor to have a fresh set of eyes look at my case. And the new doctor saw what my old doctor didn't.
Please don't lose hope. BUT (and this is a big BUT) you need to be your OWN ADVOCATE. If your doctor doesn't call you back, KEEP CALLING until you get a response! Or change doctors. Doctors are not gods, they are human and they are busy and things that are important to US aren't so important to them and can fall through the cracks. Unfortunately, pain is NOT a dangerous symptom and so when a doctor is prioritizing, a patient with imminent kidney failure goes before someone with generalized pain. It's just the way doctors triage their cases. So YOU need to push to get what you need and not just wring your hands and worry.
Tracy
I just called last week to find blood results
and thought strange or something bad
because no call back -appt at cancer center
wtith doctor on Tuesday-He had to run another
series of tests-leads to beleive something wrong
think it is lupou,not sure
but they ekeep doing bleod work,had MRI
and cat scans- I agree the doc'rs don't
call because they are too busy but I thought
nurse would return call -I caleed 3days ago
but have appt with doctor next week that was
scheduled wgeb I went the first time, so I
think there is a problem or someon would call
and say-they told me 2 weeks ago he he had to run tests because of findings
Thanks everyone for responses
Do you request copies of your lab work? There usually is a specific reason a patient is sent to a Hematologist so my question is did you ask your doctor why you were referred to one? I was sent to a Hematologist because my blood work showed a M protien which health people are not suppose to have. It is a maker for Multiple Myeloma. Also my Rheumy thinks I have APS. Do yourself a favor and always ask that the lab and or doctor to send you your test results. Then you can google what is flagged as abnormal and find out what the doctors might be thinking. From my 25 yrs. in healthcare I know that few doctors believe in an honest discussion with patients unless they are very sure of the problem. Remember doctors do not want to worry us needlessly but don't seem to understand that not knowing is worse than dealing with the reality. Best of luck.
hematologist-I was then sent to hematologist
and he did blodd tests-showed some thinks
abnoraml including postive ANA and then
had to do more tests with blood -somethin
must be wrong-see him next week
tomorrow- I did tell intake worker about
medical problems
Do you think this a good time for me to be one?