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Old 01-14-2007, 02:43 AM   #1
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naomi81 HB User
Lupus advice needed

I am posting here as I fell so terrible and no one knows what is wrong with me, I don't know if anyone out there can advise or help? I live in the Middle East and am yet to find a doc who is experienced with Lupus.

My symptoms are below.

fluctuating low platelet count
leg pains - feels like it is in my bones.
blue feet and sometimes hands, my feet hurt a lot when this happens it is similar to a burning pain but my feet feel very cold if you touch them.
Severe dizziness sometimes resulting in fainting
I was diagnosed epileptic 4 years ago after suffering the occasional seizure, no epilepsy medication controls them.
I am breathless most of the time and have had a dry cough for nearly a year, nothing gets rid of it including allergy medication.
I get a severe burning feeling internally and externally, I have to keep putting cold water on my face.
I have an ACTH problem but my cortisol is okay (although towards the low end).
I have a rash across my cheeks and nose although this rash does not look like a lupus rash. It looks like a heat rash or like I am wearing a bit too much makeup!
A lot of the time I feel so terrible I cannot get out of bed. I am 25 years old and have lost a lot of weight. I am also 5 months pregnant and have nearly lost the baby on 3 occasions, the pregnancy so far has been very complicated
and my doctor tells me I will have to deliver as soon as the baby is viable.

I would really appreciate some advice, I had an ANA antibodies test which I think was negative although the doc never confirmed. On top of this I have sugar and protein in my urine and permanent urininary tract infections which do not respond to antibiotics.

Many thanks for listening.

Naomi

 
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Old 01-14-2007, 09:44 AM   #2
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Re: Lupus advice needed

Dear Naomi, Welcome! I'm very sorry you've been having such a wide range of problems, and most especially during pregnancy.

What specialists have you seen so far? Have you ever seen a rheumatologist? Was it a neurologist who diagnosed you with epilepsy? And has the possibility of diabetes been rasied, given sugar in your urine?

Where you live, are you entitled to copies of your lab tests (bloodwork, urinalysis, etc.)? If you can get copies for your personal files, it's always a good idea to do so.

Have you read the "sticky posts" at the top of the thread list? One spells out the ACR (American College of Rheumatology) criteria for lupus. I don't know whether the same definition is used world-wide, though, but I suspect that the disease is perceived in a fairly standardized way across the globe.

Also, another of the "sticky posts" describes "antiphospholipid syndrome", abbreviated APS, which is a blood clotting disorder seen in many lupus patients; but it can also occur alone, meaning without lupus. Since it alone can cause horrible headaches & even seizures, I think it makes sense for you to read up on it, also. (FYI, Dr. Graham Hughes, the dr. who did the real groundbreaking work on APS, is English.)

You also mention having an ACTH problem. But I don't know what that means & so I won't guess. I'll have to look that up later...

Also, there's a SEARCH BOX at the top of this screen thta you can use to find more info (on lupus, APS, ACTH, etc.).

I'm sure others here will post soon, too. And we'll all watch for you to post more. Bye for now. With my best wishes, sincerely, Vee

 
Old 01-14-2007, 03:52 PM   #3
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Shashy HB User
Re: Lupus advice needed

Hi Naomi! I'm not sure what I have yet but I do know a good bit about a lot of things. Sugar in the urine it typical of diabetes. Proteins in the urine can be caused by something called porphyria, it too is an autoimmune disease. Maybe it's something you should look into. It immitates lupus in many ways. I know several people with lupus and they will all tell you that everyone is different. It may not look exactly like a lupus rash...but that doesn't mean it's not.
If you can find a dermatologist, go to them when you have the rash on your face and ask about immunoflourescent treatment. It's lights that will make the skin react in a very specific way if it's a lupus rash.
One of the women I know that has lupus got pregnant right after she began treatment, her daughter is handicapped and she can't help but think that it had something to do with the medication. All I'm saying is be careful. My honest opinion is that they shouldn't take the baby just as soon as it reaches viability, it should be in the womb as long as you can possibly keep it in there.
I'll pray for you, I wish you all the luck, help, and hope with your condition.

-Shashy-

 
Old 01-14-2007, 09:45 PM   #4
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naomi81 HB User
Re: Lupus advice needed

Many thanks for your replies, much appreciated.

I have never seen a rheumatologist but have been seeing an endocrinologist. I did a glucose tolerance test and the results came back very high and I am told that I am "pre diabetes", I also have ketones in my urine but the doctors do not seem concerned.

I have some copies of my lab tests, I am living in Dubai and the docs are reluctant to hand results over although I get copies where I can. I looked up "antiphospholipid syndrome", thanks for the information I will ask my doc about it.

ACTH is relating to the pituitary gland, it is a hormone that it releases. I have been given hormone treatment during pregnancy but none of it worked, basically I have antibodies attacking the placenta, the only thing that has improved the situation is taking asprin once a day (as advised by doc!) sounds strange but it has stopped all the heavy bleeding etc.

Does anyone else have problems breathing? I know it sounds a bit strange but I honestly go through stages when I feel at my worst of feeling like I cannot breath properly. Originally I though perhaps it was stress etc but I don't think that it is, it wakes me up at night and then after a few days it gets a bit better. It happens when I feel terrible and have the rash etc thats why I thought perhaps it was lupus? I seem to have most of my symptoms all the time but they get much worse at times, this can last for 2 weeks.

I hope you are all well and thanks again for the help.

Best regards,

Kate

 
Old 01-26-2007, 05:46 PM   #5
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Re: Lupus advice needed

Oh Naomi...I know that the fear of losing your precious baby has to be heavy on you and does not help your other symptoms. All of my babies were early. My son, now 15, 6 feet 3/4 inches tall, was born at 30 weeks and only spent 4 weeks in the NICU. My daugter was born at 35 weeks after 14 weeks of bedrest and my other son was born at 29 weeks after 7 weeks of bedrest and he spend 4 weeks in the NICU. Once the hit around 28-29 weeks, they tend to do very well, so hang tight. My youngest is 8 years old and in the 90% in height. They are all heathy.

My point in telling you this, is that I agree that the baby should be keep in its natural environment as long as possible, but sometimes for the health of the mother and the baby, being born is better. Have you had ultrasounds? Is your baby growing well? Eat as well as you can, rest as much as you can and do all the docs tell you. I will be praying for you. If my math is correct you are now in your 26th week. Each week is priceless for the baby.

I wonder if lupus affects carrying babies to term? I had difficulties in all of mine. I did take the hormone shots to help develop the lungs.

Also, if you are taking any "stop labor" medicines, those speed your heart up and may make you feel short of breath. But I would have my doctor listen to my lungs, because deal consistently with bronchitis and pneumonia and it would not hurt to have it checked.

I am so sorry you are having such a rough pregnancy. I know these other health concerns complicate your anxiety and fear. If you are a person of faith, then lean on the God of your belief and keep us posted. Meanwhile, know there is someone out here in cyberspace who understands how you are holding your breath each day that goes by right now and then thanking God for each day the pregnancy goes forward. You may be closer to 27 weeks...Like I said, you already have a viable fetus, but I can tell you this, once they hit one to two more weeks from now, they do so much better and the risk of a perfectly normal life goes up, so hang in there...you are going to make it!

When you hit 30 weeks, let us know! We will celebrate with you!

If you have any more questions, please let me know. Keep your head up! I had heard that Dubai had wonderful medicine? I would put myself on as much bedrest as possible the next few weeks if the doctor has not already done so.

You are in my prayers!

dmarie

 
Old 01-28-2007, 10:49 PM   #6
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naomi81 HB User
Re: Lupus advice needed

Thanks so much dmarie.

He seems to be growing well although is measuring a little bit small for his dates but he is very active and kicks me all the time! At the moment I just want to speed up time so I can be 30 weeks!!! I worry about him all the time.

I'm glad all yours are okay and doing well, its reassuring to speak to someone who has been in a similar situation.

The docs here are good for some diseases but they are not very experienced in autoimmune issues Hopefully I will get my diagnosis soon!!!!!

Thanks again and take care,

Naomi

 
Old 01-29-2007, 01:41 PM   #7
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dmarieok HB User
Re: Lupus advice needed

Naomi,

I think I saw that you were 5 months pregnant when I went back and read it, so I am not sure how many weeks you are. Viability with the better outcomes starts at around 27 weeks but the advances in technology in the care of preemies has grown so much in the last 20 years.

My advice to you, if possible, would be to focus your attention on getting this sweet boy here and as close to due date as possible!

I would ask your doctor about steroid shots to help develop his lungs (they are the last major organ to mature) and I will tell you all I know about what to expect. But you MUST eat, as much as possible. Pregnancy is not the best time to lose weight.

I am sorry you have the lupus complication looming over your head, but enjoy each kick, each movement!

And you are so normal worrying, that is what Mommy's do.

If it helps, I went down on bedrest at 21 weeks with my daughter (delivered at 35 weeks) and my last, went on bedrest at 22 weeks (delivered 29 weeks) I am not sure how that translates into months.

My first just came at 30 weeks...

I am not sure why your doctors are telling you he has to be delivered early, but take care of yourself, put that baby above all else and I will answer any questions you have based on my experience.

Take it easy...will be prayng!

Last edited by dmarieok; 01-29-2007 at 01:42 PM.

 
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