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Saysusie
12-04-2007, 05:01 PM
Dear Members; This is a post from new member Crystalcandace. I moved it here so that everyone could read it and welcome her!

in need of advice
hi everyone my name is Candace. I have been having medical problems since my first pregnancy 3 years ago- including Toxemia/ Hellp Syndrome, premature labor, thrombocytopenia, recurrent miscarriages, placenta previa, etc. Anyways- I have a blood transfusion the last round- though I did not bleed out. The doctors still have left me to the theory that i had caught a viral and it attacked my good blood cells leaving me needing the transfusion. Anyways I am not pregnant anymore- have 2 healthy boys and not planning on anymore pregnancies due to the severity of my complications I got my tubes tied. When my OB released me he gave me a note for my practiconer and said they would want to run test. This note said: positive anitcardiolipin antibodies. They would not run the test so I gave it to my cardio. and he ran Lupus screening test (vipor venum ...etc) resulting in a Positive. When I started having the major problems I had been sick for around a month or so...having rashes across my forhead and all over my body...slightly on my cheeks. (more inflammed on my forehead though.) So after the POSTIVIE I went back to my practioner and finally they ran tests. I had High MPV, ANA Titer 1:80 neg., Positive Lupus Anticoagulant, High APTT, - I have had these rashes again and again the cheeks become brighter have a day or two but they always start wtih my forhead. I am not on heparin so the drugs have not induced these results. Anyways - my practioner has decided that I dont have Lupus but wants to diagnosis me with APS which a lot of Lupus patients have anyways (explaining my blood problems) but not the rashes not the extreme fatigue and wrists and body aches. Not that every time I am sick I am sick for long periods 2 weeks min. and I catch everything. I have written down a loooooooooong list of symptoms even dating flares? and what happened each day for a 3 week period - that dont explain just APS...what should I do? Am I over reacting - does anyone think I should be concerned- also been losing my hair slowly - its everywhere not patches but just slowly falling out- never had this before until my last preg. when my hair suddenly became brittle. I am only 24 and a mother of 2 just in need of some good advice - maybe to help me at my next appt. I have scheduled with a rheumotologist and steriods on hand for next flare in case he says. Thanks for listening sorry so long... Candace

Saysusie
12-04-2007, 05:25 PM
Candance;
Your symptoms do sound as if you could possibly have Lupus, especially with the high ANA titer and the anitcardiolipin antibodies. The problem with Lupus is that the disease mimics so many other diseases. The diagnostic process can be lengthy and frustrating (to say the least).
You are doing the right thing by keeping track of your symptoms, educating yourself about your illness (what it might and might not be) and learning about the medications and treatments available.
You've read the criteria necessary to get a Lupus diagnosis, so you have an idea of what needs to be done and what doctors are looking for. This will help you to make informed decisions with your doctors. You can always come to us for information, answers and support. There will always be someone here to help you when you need it! Regardless of your final diagnosis, you are always welcome here!

Peace and Blessings
Saysusie

Faith
12-05-2007, 07:01 PM
Welcome CrystalCandace,

As Saysusie said welcome and you are always welcome to chat. It is very frustrating; and alarming. You stated you have rashes, what do they look like? Size, shape and color? Some of us who have Lupus are sun sensative along with reacting to flourescent lights.

I would suggest getting copies of all your lab work and making an appointment with a rheumy. Take your documentation and labs along and explain how you have been feeling. You may have to see a couple of rheumy until you find one that listens and can give you feedback. It's frustrating; but hang in there. You are not alone.

Keep us updated and take care.

Faith 8)

crystalcandance
12-05-2007, 08:45 PM
My rashes I get start off on my forhead- same rash- always starts with it- its red and tons of dots...and then after that I get a cheek and nose rash red slightly less red sometimes...and then ig et the same rash starting on my hips migrating up and down my body...this one looks different then the face rash though...yeah have an appt with a rhuemy on jan 3rd...wish me luck...think im going to start a journal for my symtoms on a day to day basis - i had already started documenting but that might help more...thanks for the hope ;o)

crystalcandance
12-05-2007, 08:49 PM
as

Faith
12-07-2007, 01:48 PM
Hi crystalcandance,

The rashes don't sound like a coin Lupus rash; usually raised and coin shaped, no dots. Have you tracked a food diary to see if you are allergic to foods? I found out I am allergic to lettice, yeast, and rice. I was getting a rash and itching like crazy. I didn't realize how many things have yeast in it; everything.

I had to eliminate it all; I buy a yeast free bread ($5.00). Maybe worth checking into? A lot of Lupus patients have a lot of allergies.

Well, it sounds like you are on the right track. I am glad you are seeing the rhuemy soon. Keep a log and take it in and talk to the rheumy about it. Stay persistent in you want a diagnosis. Hang in there. We are here if you need us, anytime.

Take care & have faith,

Faith

crystalcandance
12-08-2007, 03:33 AM
its not a itchy rash though...thats the only thing i break out almost like acny and its gone really fast but the same rash every time

Faith
12-17-2007, 03:08 PM
Hi Crystaldance,

Have you taken any cortisteriods lately? I broke out in an acne rash due to cortisteroids per the dermotologist. Though, they didn't look like acne, they were dark red and scaly. It was weird.

I would see a dermotologist and explain that your conditions. The dermotologist might be able to make a suggestion. I am sorry that I am not any further help. :oops:

Take care,

Faith

crystalcandance
12-18-2007, 12:50 PM
There is no medicines inducing any of these rashes- the acne like rash on my forhead is the same rash i've gotten for some time now- (it doesnt stay but 2 to 3 days- sometimes reappearing in a day or two but vanishes out of thin air ya know) and when i say acne i mean it is raised not really white heady or anything...just a bumpy red dots rash...I dont take very many medicines unless I truely have too- and being allergic to a lot I am aware when I do take one. And once again here we go have rashes on my arms and tummy and starting to get sick - muscle aches like crazy...round 99999999 here we go again...my doc told me to try and get cancellations with the rheumy asap b/c he doesnt understand whats going on with me. So I dunno...hopefully Jan 3rd comes fast...frustrated!

crystalcandance
12-18-2007, 12:55 PM
Hi Crystaldance,

Have you taken any cortisteriods lately? I broke out in an acne rash due to cortisteroids per the dermotologist. Though, they didn't look like acne, they were dark red and scaly. It was weird.

I would see a dermotologist and explain that your conditions. The dermotologist might be able to make a suggestion. I am sorry that I am not any further help. :oops:

Take care,

Faith

Oh I took pics of my rashes for the docs to see...especially this forehead one...when you say coin shaped what do you mean? The ones I get on my body are different then my face??? Just wondering?

Faith
12-18-2007, 09:59 PM
Hi Crystalcandace,

When I say coin shaped, I mean they are round like a penney and slightley raised. I have never had dots; though everyone is different. Have you had it biopsied by a dermotologist? I have been through rounds of biopsies through internist; the best suggestion is to call around to dermotologists to see if they specialize in Lupus or treat related skin issues. Maybe your rhuemy can make a suggestion?

I would want to rule out Lupus, see Newly Diagnosed and the subsection Lupus criteria. One of the labs usually ran is a Sed rate. You can also check out webmd and type in Lupus labs and it will list them.

I broke out in acne, not like your typical pimples, dark red, scaly, dermotologist suggested special wash and it finally calmed down. Still have red scars from it; more annoying than anything.

I don't know if I have helped; but we are all here. You are not alone. if you have any more questions don't hesitate to ask.

Take care,

Faith

crystalcandance
12-19-2007, 02:28 PM
yeah i have checked into many of these things reading for months b/c i have been being tested and sent from doctor to doctor for months. We are in the military at a remote base really so not a lot of sources leaving in 2 months so I am ok with leaving the diagnosis at APS for now. I have read the criteria on that other page...I actually wrote on that originally. I have all these symtoms some all the time some from time to time: Butterfly rash, rashes, nose ulcers, arthrititis - specially wrists, muscle spasms, hematolgoical disorder, postive anticardiolipins, thrombocytopenia, anemia, hair loss, neg. ANA 1:80 titer, reoccuring toxemia and hellp syndrome in pregnancy...yeah i have the appt with rhuemy will prob get them biopsied then...hopefully they listen

crystalcandance
12-19-2007, 02:32 PM
I would want to rule out Lupus, see Newly Diagnosed and the subsection Lupus criteria. One of the labs usually ran is a Sed rate. You can also check out webmd and type in Lupus labs and it will list them.


I am trying the webmd thing- tried it before and typed in Lupus Labs and its not working where do i type that exactly...

crystalcandance
12-19-2007, 02:47 PM
ok so i found some of them...lupus tests...just looked up SED rate test which has not been done on me...ok so this is what it says

"When inflammation is present in the body, certain proteins cause red blood cells to stick together and fall more quickly than normal to the bottom of the tube. These proteins are produced by the liver and the immune system under many abnormal conditions, such as an infection, an autoimmune disease, or cancer."

So this really irks me - I have sticky blood platelets and well now that explains maybe why the doc that did some of the tests didnt see inflamatoin??? yeah?? Thanks for that tip writing that down for the rheumy..prob def. want it ran ;o) THANKS A TON

Faith
12-19-2007, 11:23 PM
Hi crystalcandance,

I am glad you found some of the tests. A Sed Rate (ESR) and C-Reactive Protein (CRP) definately need to be run!!! You are very welcome for the tip.
Also the following:
Anti-SS-A (also called Ro).
Anti-SS-B (also called La).
Anti-dsDNA (antibodies to DNA).
Anti-RNP.
Anti-Smith (Sm).

Hang in there and continue to fight for a rhuemy you are comfortable with and that seems knowledgable. You had mentioned you are on a military base; hmm. I have read that many military stationed in Iraq and Afghanistan came down with Lupus. Check around and see if you can find someone knowledge within the military to see.

Good luck & happy holidays.

Faith 8)

crystalcandance
12-20-2007, 12:51 PM
yeah im really irked now...my cardiologist ran tests for a lupus like inhibitor and he would have ran more tests if he had not moved offices....so i had ot take it to base. And well he didnt run any of these tests its like he didnt want to or something...It was not my choice in the beginning for a doctor to give me a note and say they will want to run tests for Lupus. Igh igh igh oh well...yeah i heard this rheumy i'm fixing to go see is really good so kinda excited. Writing these tests down so we wont forget they haven't been ran...kinda ironic though- cuz for sometime i've always been told that they need a certain color test tube to run my labs b/c i have sticky cells...lol and that means inflammation which my doc says i dont have - lol...Yeah HAPPY HOLIDAYS - All I have is one stocking stuffer to get and Santa's done this year no food shopping no christmas stockings or nuffin whew! So glad I got started early this year. Well nice talking to ya! THANKS A TON

crystalcandance
01-06-2008, 08:38 PM
Hey guys! Just wanted to give you all an update- saw the rheumy last Thursday...and she immediately ran all the tests I had already done over PLUS all the others that had not been done ESR and C Reactive and all the others listed plus more. I'm very pleased with my visit. I dont see her for 3 more weeks though so she can get the tests back. She did prescribe me prednisone though- I told her I really dont want steriods yet b/c of the side effects- mainly weight issue- still trying to lose baby weight. So she prescribed it 5 mg for 5 days - 1 a day thats it. Says the side effects will probablly less than the other way i have it 6-5-4-3-2-1 or whatever doses it is like that. I do wonder if anyone has had hair loss and any advice...my hair had been falling out slowly - finding it all over the house- and had become very brittle over the last year...in the past 3 weeks i and my husband have noticed its starting to fall out in clumps now...any advice? something to do...??? THANKS to everyone for all the other advice before! You guys are grrrrrate! :lol:

Saysusie
01-07-2008, 12:32 PM
Hi:
Almost all of us have experienced hair loss with Lupus. Either due to the disease itself or due to some of the medications we take for the disease. In almost every case, our hair has grown back.
You can click on "search" above; type in "Hair Loss" and all articles in these forums dealing with that subject will come up. After reading what other members have experienced, what they've suggested and some of their stories, let me know if you have more questions and I will be happy to answer them for you!
You Are Not Alone!!

Peace and Blessings
Saysusie

Faith
01-07-2008, 05:30 PM
Hi Crystalcandace,

Glad to hear you have a new rhuemy; sounds great. Falling out hair; mmmmm it's typical of Lupus. I lose mine all the time due to Lupus.
I have heard that Biotin is really good for you 2,000.

I recently started a new shampoo called Nioxin which is supposed to clear out the meds on your scalp; my hair loss has slowed down drastically and I have had the shampoo a week. Honestly, I didn't think it would work!! I am not finding hair balls on the floor and sweeping every two days. lol.

Something to think about prior to your diagnosis. If you haven't already thought of it; go on the internet and purchase a life insurance policy and hopefully you will never use it. If you are indeed diagnosed with Lupus; after the diagnosis you will not be able to obtain life insurance.

The same goes with medical unless you work full time for a company. If I had to do it all over again, I would have purchased an individual policy on my own and paid for the premium every month. Just some kind words of advice; I am not trying to frighten you. If you don't have Lupus; nothing to worry about and you are covered for the future either way.

I hope this helps and keep us posted. Glad to hear about the rhuemy.

Take care,

Faith 8)

crystalcandance
01-07-2008, 08:47 PM
yeah oh my what a good idea...well i had told my husband about this already- the insurance i didnt think about life insurance...as i said though he is in the military i have medical insurance so long as he is in or he retires 20 years at least...and life insurance i'm pretty sure i have that already as long as he stays in...but thanks for the advice...def. gonna try that hair stuff cuz its gotten significantly worse in the past couple weeks...i will talk to my hubby about all this thanks your a smart gal! Good idea to pull it out a second one - incase we get out of the military...which we want to eventually end up near family. thanks a ton! :D

luvwine2007
01-08-2008, 10:53 AM
We are military and you do have insurance while your husband is in....but you must get another policy now! Once he retires, you won't have insurance anymore and if you have a lupus dx, it will be next to impossible to get one. your hubby should get an alternate insurance as well, since he will be in his 40s (or close to) when he retires and it will be harder for him as well.

crystalcandance
01-08-2008, 10:41 PM
So do you have lupus too??? Did you get insurance through someone else?? If so who? I was talking with a family advocacy lady from base and she said that Tricare Prime would have to except us afterwards- but its super pricey for insurance. She thinks this is a good suggestion- I just dont know if we can afford a second insurance right now- do you know how much it runs if your not using it at the time? Someone else told me that b/c I have insurance during the diagnosing that they have to except me later on b/c I was insured at the time...but I dont believe that one bit. Otherwise I wouldnt' be warned as I am...Any suggestions as to go for? Where are you stationed? We are fixing to move to Utah - Hill AFB...I'm kinda excited b/c we live is such a remote area now that the medical care has to be way better later. :oops:

luvwine2007
01-09-2008, 11:56 AM
Well, I don't have an official dx yet, and it isn't even in my military record yet. I didn't know they had to accept you. Another thing to worry about I suppose. Anyhow, I have great health insurance through my job, and tricare is my secondary insurance.

I have life insurance through another company, which we got almost two years ago before my hubby deployed and right before I separated from the military. That policy can't change, even with an official dx. So, I suggest both of you get life insurance soon! We went through First Command. They are close to all bases and are great with the military. But, I'm sure there are plenty out there.