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Is This Lupus--and Why Do I Need An Oncologist/hematologist?

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Hi everyone. Maybe someone out there can help me because the doctors have not been able to for 11 years now. Originally because of joint pain, my gp thought it might be lupus, but all tests were negative, and through the years I was thought to have multiple sclerosis, fibromyalgia, and rheumatoid arthritis. I have had many painful and unusual symptoms, including a stroke-like seizure resulting in numbness and weakness of my left side. The most that had showed up in my bloodwork was an extremely elevated sed rate about 5-6 years ago. I recently saw a new rheumatologist who was pretty well convinced from my exam that I had ankylosing spondylitis until my bloodwork came back. I understand from the nurse (the doctor never called me) that a coagulant test came back positive for lupus, but that "i do not yet meet all the criteria". It looks like they might be finally zeroing in on lupus as a diagnosis. Confused What concerns me, though, is that she is referring me to a doctor (who I found out was an oncologist) because of a low white-blood count. Are hematologists and oncologists the same or related, and is this low white-blood count possibly related to lupus, or could it be something else. Thanks for reading this, and please know that you are all in my prayers.
Rose
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replied September 26th, 2003
Active User, very eHealthy
a Few Things...
A low white blood count can be associated with lupus. An oncologist is, as I recall, a cancer doctor. A hemtalogist is the "blood" doctor.

The reason why the nurse said that you have the lupus anti-coagulant but have not met the criteria for lupus is just that. Someone can have the lupus anti-coagulant but not have lupus.

To meet the criteria, you need to have four of the eleven symptoms listed at the college of rheumatology's website.

As always, there are a lot of things that could be going on with you. Even after seeing a rheumatologist, hardly anyone gets an immediate diagnosis. I think I waited six months or longer for my lupus diagnosis.

There are things that you can do to help your doctor get a diagnosis

1) keep a diary everyday of anything that happens...Did you have a headache that day? Nausea? Joint pain? If so, where and for how long? Did you have a fever? You get the idea.

2) if you saw other doctors before the current one, go and get all of your medical records form these other doctors.

3) get all of your lab results, past and present. Organize them and turn them over to the lead doctor.

4) if you are really worried about lupus, you can ask if the following tests have been done...Ana (the results are given in a ratio formula), sed rate (which I think you said was high in the past), c reactive protein, double stranded dna, c3 & c4 levels, etc. You can go to www.Lupus.Org and can retrieve a more thorough list of blood tests.

Remember you know your body best...So let the doctor know everything that has bothered or concerned you!

I hope this helps a little.

Hugs,
ladybrannon Smile
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replied September 28th, 2003
Thank you, ladybrannon,for your very informative response. I guess I always assumed that someday a doctor would put all the pieces to the puzzle together and say, "aha--this is what's been causing all your problems." but through the years it has become apparent that I am my own best doctor. Your advice about keeping a journal of my symptoms is an excellent one, especially considering I tend to get amnesia when I visit the doctor and afterwards i'll think of all the things I should have mentioned. One more question, though. Some people tell me this low white blood count probably only means I am anemic and may need iron supplements. I thought anemia was when your red blood count was low. Can you or someone shed some light on this? Thanks so much.
Rose
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replied September 28th, 2003
Active User, very eHealthy
Rose...
Anemia...Is a low rbc count. It is also found in a lot of lupus patients. Sorry that I did not make that clear.

The following was copied from the lfa's symptom list: the first part is the symptom and the percentage is the number of lupus patients who have experienced it...

Achy joints (arthralgia)
95%
frequent fevers of more than 100 degrees f.
90%
arthritis (swollen joints)
90%
prolonged or extreme fatigue
81%
skin rashes
74%
anemia
71%
kidney involvement
50%
pain in the chest on deep breathing (pleurisy)
45%
butterfly-shaped rash across the cheek and nose
42%
sun or light sensitivity (photosensitivity)
30%
hair loss
27%
abnormal blood clotting problems
20%
raynaud's phenomenon (fingers turning white and/or blue in the cold)
17%
seizures
15%
mouth or nose ulcers
12%


hugs,
ladybrannon
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replied September 28th, 2003
Experienced User
We Must Be Twins!
No kidding! Your story is a lot like mine. I had the stroke and numbness on my left side. I'm still trying to get answers. I still have lots of problems on my left side. Weekness and cramp-like pain that won't go away! Sometimes it's worse than other times and lately it's been bad!!! Sad i'm going to print out your story to show my doctor .I'm not happy this is happening to you,but it makes me feel better that I am not crazy!!
It's been a few years and no doctor has been able to help me understand why this happened to me.......Thanks for sharing your story.....Sharon Smile
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replied September 29th, 2003
Hi sharon-
I agree, it's good to hear that i'm not alone with these unusual symptoms. I hope this helps you with your doctor. Thanks for your response--you're in my prayers.
Rose
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replied September 29th, 2003
Ladybrannon (or anyone) --do you know what, if anything is done to correct a low white blood count? I see the hematologist in two days, and I was just wondering what I might expect. Thanks. Rose
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replied September 29th, 2003
Experienced User
Low Blood Count
Hi rose, I can only tell you that in the past when I was told I had a low white blood count, I was in the hospital and they would not let me out til it came up! Or, when it would show up in my reg. Labs. My doctor would either put me in the hospital or would monitor me real close. I almost missed the birth of my grandson because my doctor wouldn't let me travel until it was normal.When I told him nothing was going to keep me from being there, he informed me that I would not only be putting my life in danger, but also the baby's. That woke me up!
So take it seriously and do what the doctor says.........Sharon Smile
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replied October 2nd, 2003
Oncologist Or Hematologist
Hi,
i will try to help. An oncologist deals with cancer. A hematologist deals with diseases of the blood such as anemia, low or high white blood count, low or high platelet count. Often times a doctor will be a specialist in both oncology and hematology. I hope this helps. I also have lupus and was diagnosed in 1999. God bless, metrauma
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replied October 2nd, 2003
Active User, very eHealthy
Rose...
Are you on methotrexate of cytoxan, per chance?

Ladybrannon
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replied October 2nd, 2003
Ladybrannon--i am not on any medications, other than a low-dose estrogen because of a hysterectomy. I am scheduled for a liver/spleen scan in the morning. The hematologist tried to explain why he needs this--something about needing to see how my blood is circulating there, but I don't really understand. Any ideas? Thank you. Rose
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replied October 2nd, 2003
Active User, very eHealthy
It sounds to me like the doctor is being very thorough and looking at all options.
I wish you luck tomorrow! Let us know how it goes; we will be thinking about you.

Hugs,
ladybrannon
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replied October 2nd, 2003
Experienced User
Hysterectamy
Rose, I had mine in jan '98 ,i had a really rough time. They thought I had cancer. They even had a cancer doctor do the surgery. I had alot of people in the waiting room praying for me and they found none of the cancer that showed up on the test. It's a long story ,but they said that if I had waited another week ,i would be dead. The lord wasn't done with me yet!!..........Sharon
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replied October 3rd, 2003
Experienced User
Rose
Hi rose,

i have been told many times by my doctors that I am not allowed to use estrogen. It greatly increases the risk of blood clots in lupus patients. My obgyn went all the way to washington ( I live in newfoundland) to research for me. When he came back he said that he would not prescribe the pill because of the estrogen. He said I would have to go to someone else. If you are having problems with circulation you should really look at stopping the estrogen. I also asked my gp and he gave me the same answer. Right now I take depoprovera for b/c.

Good luck,
jenn Cool
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replied October 3rd, 2003
Active User, very eHealthy
I second what jenn says, you want to make sure there are no circulation problems. I have been taken completely off birth control pills because of it.

It should be really easy to find out if they have already done the tests. A simple call to your doctor should confirm. Ask them if they have done the antiphospholipid tests...

Hugs,
ladybrannon
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replied October 3rd, 2003
Thanks everyone--the liver/spleen scan went fine. I get the results next week. My recent bloodwork did show a blood clotting problem (i think--the nurse told me this very quickly) because the rheumatologist said I should start taking an aspirin a day. So--i guess the estrogen is not a good thing for me, but will I be okay without it after a total hysterectomy? I won't change any medications until I see the doc next week, though. God bless you all. Rose
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replied September 23rd, 2011
Lupus
thank you for all of this useful info, because my doctors do no tell me anything.

alone in boston
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replied September 23rd, 2011
Lupus
thank you for all of this useful info, because my doctors do no tell me anything.

alone in boston
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