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Range of underlying disorders?

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

Range of underlying disorders?

Postby eliz » Wed Jan 04, 2006 10:42 pm

by eliz (74 Posts), Wed Jan 04, 2006 10:42 pm

Hi. I was wondering if there's a place on the site that one of you know about where I could find out about the various underlying disorders, tests done to find out if you have them, and then what is done with the knowledge that you have one. I have some understanding of lupus and RA, but other than that, I'm really confused.

I haven't had positive ANA tests for lupus, but that's the only test I've had. I'm wanting to get pregnant again (and will try to meet with a maternal medicine doc), and I've been told to expect to get pih or pe again, and to likely get it worse, since that has been the trend so far in my pregnancies. I have recently been diagnosed with ms, which is an autoimmune disease, but for some reason ms and pregnancy get along well. However, having one autoimmune issue puts me at risk for others, so my OB is assuming there's something else autoimmune going on with me that makes my body react the way it does in pregnancy.

Any info about underlying autoimmune conditions and/or tests would be really helpful. I'd like to figure all this out before I conceive again, to make sure I'm not taking too many risks with my health in a subsequent pregnancy.
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Re : Range of underlying disorders?

Postby alexp » Thu Jan 05, 2006 07:02 am

by alexp (1475 Posts), Thu Jan 05, 2006 07:02 am

Hi Elizabeth!

You've asked some excellent questions. I don't know if I have exactly what you're looking for, but I'll try.

This is a list of FAQ about preeclampsia in general: [url]http://www.preeclampsia.org/FAQ.asp[/url]

Link to NIH working group report:[url]http://www.nhlbi.nih.gov/resources/hyperten_preg/[/url]

Ask the Experts thread on "what should be tested for postpartum":
[url]http://www.preeclampsia.org/forum/viewtopic.php?t=2273[/url]

This thread starts out about lupus, but goes into different types of autoimmune disorders:
[url]http://www.preeclampsia.org/forum/viewtopic.php?t=5127&SearchTerms=autoimmune,disorders,preeclampsia[/url]

HTH a little. I know it isn't much to go on...someone else should be along soon who can offer more input.





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Re : Range of underlying disorders?

Postby eliz » Thu Jan 05, 2006 09:12 am

by eliz (74 Posts), Thu Jan 05, 2006 09:12 am

Thanks for the links. It sounds like I'm not the only one who has some autoimmune issues, but who doesn't know exactly what they are. I guess I may not figure it out before my next pregnancy (or ever!), but it would be nice to feel that I have covered my bases. If there are some that are testable and can be treated during pregnancy, I just want to be sure I do that.

Did anyone have autoimmune hives throughout their pregnancy? Starting at the end of the first trimester, I would get rashes of hives whenever I was particularly warm (in the shower, I'd always get them on my ankles, if I sat and watched TV under a blanket, I'd get them on my thighs and legs).
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Re : Range of underlying disorders?

Postby deerhart » Thu Jan 05, 2006 11:58 am

by deerhart (3282 Posts), Thu Jan 05, 2006 11:58 am

The most common AI issues are RA and Lupus, others include Grave's Disease and MS. Any autoimmune issue would probably raise your risk of PE.

But these are not the only things linked to PE. BLood clotting disorders both hereditary and not are closely linked with both PE and reoccurant miscarriages (Factor V, MTHFR, Lupus Anticoagulant Syndrome etc..). These are also known as Thrombosis. Insulin resistance is also being looked at as a possible issue with PE. Further, studies have found that having uncontrolled asthma can be connected with incidence of PE.

As for the hives are you allergic to anything? Warmth will cause minor skin allergy irritations to become nice lovely hives (as I learned this the hard way after my allergy skin injections on my back I slept in my ultra warm water bed and had huge hives all over my back which wasn't supposed to happen, but the heat brought them out). Depending on the individual cold can bring out hives (it doesn't me)

There is also a condition of pregnancy called PUPPP (Pruritic and Urticarial Papules and Plaques of Pregnancy) that can cause hives. Are the hives painful or itchy? I have constant rashes on my hands from allergies, but its a red rash luckily and not hives. I only break out in hives if I mow the lawn. Its most likely that you have some allergy and the stress of pregnancy pushes your system over the edge. I have very severe allergies and asthma and (lucky me) I am one of the 25% who's condition worsens during pregnancy. My asthma was very uncontrolled (and not even diagnosed) in my first pregnancy, though I had probably had it for a good 7-8 years at the time (including black out spells which my allergist at the time completely ignored) and it took me a good 18 months after diagnosis to get it under control (just in time to get pregnant again hehe) and today I have almost 0 problems with it at all.

I also have the Lupus Anticoagulant syndrome (blood clotting disorder) which is the most likely cause of me PE/PIH.
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Re : Range of underlying disorders?

Postby alexp » Thu Jan 05, 2006 12:01 am

by alexp (1475 Posts), Thu Jan 05, 2006 12:01 am

Yes, yes, yes, on the hives!!

I had them something terrible - at the time I didn't know I had any autoimmune problems. I kept popping out in hives while in the hospital on bedrest. It was miserable.

It was the hives that led to me being diagnosed - about 6 months after my twins were born, I went to bed with a minor case of hives on my leg and woke up so covered - they were in my mouth, over my eyelids, on the bottoms of my feet - everywhere. I wound up in the ER...they thought I was having an allergic reaction. I was actually having a major flare. Several blood tests and about a month later - I found out about the underlying autoimmune condition.

A funny story - well, not really funny - later that year, a friend of mine thought she was pregnant, and was waiting to test. She was asking everyone what their first symptoms of pregnancy were. I was like, "well, I always felt crampy and nauseated...and then I always ran a low grade fever and felt like I was getting the flu,"...I got some strange looks from that comment. LOL. I had to think about it before I realized that fever and body aches were NOT normal pregnancy symptoms.

Good luck to you on covering all your bases before your next pregnancy! [:)] I wish I could have given you some more substantial links...they are out there, I'm sure, I just haven't found them yet! You are on the right track planning to meet with an MFM doc, in my opinion. He or she may be able to give you a better look at all your options, etc.

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Re : Range of underlying disorders?

Postby laura » Thu Jan 05, 2006 12:08 am

by laura (5139 Posts), Thu Jan 05, 2006 12:08 am

quote:
Originally posted by AlexP


A funny story - well, not really funny - later that year, a friend of mine thought she was pregnant, and was waiting to test. She was asking everyone what their first symptoms of pregnancy were. I was like, "well, I always felt crampy and nauseated...and then I always ran a low grade fever and felt like I was getting the flu,"...I got some strange looks from that comment. LOL. I had to think about it before I realized that fever and body aches were NOT normal pregnancy symptoms.


They're not?! I don't have AI issues (yet, haha) but I run a low grade fever and have aches through my whole pregnancy! They're relieved by tylenol. That's nice and scary! I hope I'm not harboring some weird ai thing!
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Re : Range of underlying disorders?

Postby alexp » Thu Jan 05, 2006 12:22 am

by alexp (1475 Posts), Thu Jan 05, 2006 12:22 am

Nope, they ain't normal!

LOL...I never told my OB about the fevers, because...I had always heard that pregnant women got overheated more easily...I just figured they meant 'feverish'. [B)][8)]
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Re : Range of underlying disorders?

Postby lizzybeth » Thu Jan 05, 2006 05:08 pm

by lizzybeth (867 Posts), Thu Jan 05, 2006 05:08 pm

Hi Elizabeth,

Lordee you could give blood for the next 24 hours and maybe, then, have enough to test for every AI disease. What I would do if I were you is to make an appointment with a perinatologist and ask to be tested for the specific disorders that are linked to PE. I would also ask whoever is treating the MS (Neuro or Rheumy) to rule out whatever they can prior to you becoming PG, explain that you have had PE and educate the doc about AI links to PE and that you would like to have whatever you can ruled out.
Everyone else has given you great info. I do know that even if your ANA for Lupus is negative (mine is) the OB should still do the Lupus anti-coagulent as you can have Lupus with a negative ANA.
BTW, not to be to nosey, just wondering if your MS is treated by a Rheumy or a Neurologist?
Let me know what your Docs say when you get the chance.
BTW, I have AI....
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Re : Range of underlying disorders?

Postby eliz » Thu Jan 05, 2006 07:17 pm

by eliz (74 Posts), Thu Jan 05, 2006 07:17 pm

My ms is treated by a neurologist. I've never seen a rheumatologist. But I've only had the ms diagnosis since september. And the diagnosis is actually "probable ms" which is mostly a formality until the disease progresses. I was tested for lupus which is one of the reasons why they settled on the diagnosis of ms - since I haven't had enough symptoms of ms for a definite diagnosis, a lot of it is by process of elimination.

When I brought up other autoimmune issues that I know about and that seem to fit my symptoms some, I was told I could easily have some of those syndromes, too, but all they know for now is that I have ms. So, the advice is to deal with ms and forget about trying to get answers about all the things that might be consistent with what's going on.

So, in general, I'm fine with that advice (seems the nature of autoimmune issues - no specific diagnostic test for a lot of them). However, as I'm thinking about another baby, my desire to know more about my autoimmune issues is driven by wanting to be sure that I'm followed and treated properly, and that another pregancy won't worsen (or ellicit) some underlying condition (or that the condition won't threaten my pregnancy or me).

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Re : Range of underlying disorders?

Postby eliz » Thu Jan 05, 2006 07:25 pm

by eliz (74 Posts), Thu Jan 05, 2006 07:25 pm

Oh, and about the hives. I am not allergic to anything really - I barely react to poison ivy. And I went to the allergist when I had the hives and was tested for a bunch of things. I didn't react to any of the things they tested for, and in the end I was told that they were autoimmune. It happened to some degree throughout both of my pregnancies.

The hives were itchy, but not painful, and they went away after I cooled off for a while. I just learned to take luke-warm showers and to watch tv without having a blanket on me! They weren't PUPP. If I remember right, that was because I was PUPP happens only at a certain time during pregnancy. I can't remember if that was definitely the reason, but I know my symptoms didn't fit with PUPP.
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