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StringBean
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/23/2010 12:07 PM (GMT -7)   
Hi everyone! I am new to this board. I have tons of questions! I spent quite a bit of time this week searching the internet for answers to my questions, but have only come up with more questions. After reading through some of the other posts, I guess it is best to tell you all about myself and ask some of those questions. I don't even know if I am in the right place, but from my test results and reading, it seems this is a good starting place.
 
I am a 30 year old female with one 15 month old child. After the birth of my beautiful little boy, my joints began to ache. I contributed this joint pain and swelling to childbirth and hormones. But, after 15 months, this pain should have subsided. Now, I have other issues and more pain. My routine bloodwork was all normal. My Rheumatoid Factor is 28.5 and says "strong positive specimens." My ANA screen  is positive. My ANA titers say "> OR = 1:1280 Fine SPeckled Pattern AND Nucleolar Pattern."
 
Problems as a child:
*Epilepsy/seizures from age 9 to age 12
*scalp psoriasis began at age 9
*subluxations of the patella at age 15
 
Problems as an adult:
*continuation of scalp psoriasis 
*slightly weaker and more tired than most, but not debilitating
*shoulder injury/pain in 2008-doc said hypermobile joints...Ehlers Danlos Syndrome?? No real diagnosis
 
Problems after childbirth:
*extreme back pain during pregnancy
*slight pelvic pain toward end of pregnancy
*edema after childbirth
*very painful and stiff joints, but not swollen (lasted during 6 months of breastfeeding)
*possible pelvic girdle pain-sharp pain when i transfer weight from one leg to another, pain when i try to push or pull the ottoman with my foot
*fatigue, currently extreme fatigue (I go to bed before 8 sometimes!)
*"sensitive" stomach-haven't discussed this with a doc
*hair loss, at I think I am losing more hair than I should be
*pain in both hips, but the right is worse
*hypermobility
*lots of joint "popping"
 
I think this is it, but I can't remember.
 
Thanks so much in advance! I am just starting my family and I want to be healthy!
 
 
 
PteriTart
Career Mom and new to this Rheumatology thing


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 1/23/2010 4:56 PM (GMT -7)   
Hello and welcome! With the symptoms you describe and a positive ANA, you might want to see a rheumatologist. Did your primary doc do the bloodwork and did he/she discuss the results with you? Sometimes it takes quite a long while to get an actual diagnosis, but in the meantime symptoms are treated.
This is a wonderful board, very kind and helpful. Weekends are sometimes quiet but I am sure more people will be along to welcome you shortly. Hope you feel better!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/23/2010 5:20 PM (GMT -7)   
Just wanted to add my welcome. I hate that you had a need to be here, but as Fran said there are some wonderful people who can offer some advice and a soft place to land! You prolly want to call asap to get a rheumy appt., sometimes it takes a while to get in! I hope you get some answers soon! Bless ya, Judy

StringBean
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/23/2010 6:31 PM (GMT -7)   
Thanks for the warm welcome! My PCP ordered the tests and told me about the positive RF and ANA. I checked with my insurance and told my PCP who I would like to see. I have a follow-up with my PCP Wednesday. I hope to see a Rheumy (new lingo for me) SOON. I am very anxious to see what all of this is about.
PteriTart
Career Mom and new to this Rheumatology thing


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/24/2010 7:54 AM (GMT -7)   
pteritart,

Seeing a rheumy is a good first start. Take a look at our resources page at the top of the main lupus page. It has good advice plus lots of good info about lupus. The first thing we tell someone new to a rheumy's appointment (or any doctor's appt for that matter) is to go armed with a list of all of your symptoms, whether or not you may think they're AI related. And I always take another list of questions.

I'm glad you found this site and hope you get the info and support that you need here.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/24/2010 2:20 PM (GMT -7)   
Hi pteritart,

Welcome!!

Everyone has given you great advice! I'm so glad you're going to see a rheumatologist right off the bat! As Pat mentioned, take a list of symptoms and questions with you. A list helps because sometimes it's hard to remember everything.

You probably will want to tell him/her that you'd like to be tested for *lots* of different things in order to (hopefully!) rule most of (all of?) them out or get the proper treatment started!

You're so young and you need to be able to chase that beautiful baby boy around!!

One thing you should know that it's absolutely crucial to find a doctor or doctors who will LISTEN to you! If your doctor does not listen, find another one ASAP!

Just based on your symptoms (I share many of your symptoms!) you may want to be tested for (not necessarily in this order):

lupus
rheumatoid arthritis (NOTE: lupus + RA = "rhupus")
Lyme disease
celiac disease
fibromyalgia

It is possible that you have more than one autoimmune disease or related disorder going on there....I'm not trying to overwhelm you but you need to know the possibilities up front. There are others but that list is a good start.

You mentioned "sensitive stomach"....you may need to see a gastroenterologist to check that out. A gastro can do celiac disease testing, or you can test yourself by eating a gluten-free diet for two weeks then go back on gluten and see how you feel. If you feel great gluten free and terrible when you start eating gluten again, you're at least gluten intolerant if not celiac. Please note that Lyme disease can cause gluten intolerance too.

Helpful link if you decide that you want to try the gluten free diet:

glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

Do you ever experience neurological symptoms such as "brain fog" or tingling/numbness or tremors? You may want to be tested for B12 deficiency, although brain fog goes along with fibro and lupus and celiac disease and Lyme disease and other miscellaneous autoimmune diseases as well.

By the way, I never in a million years would have thought I could have Lyme disease (not being the outdoors-y type!), but I do! So it can't hurt to be tested.

I'm in my first week of treatment for Lyme and can already see a positive difference in how I feel.

Anyway, good luck on your journey to diagnosis! Don't get too frustrated if it takes a while! It's very typical to test negative for a particular disease and then months or even years later, sure enough, you find out that's what it was all along!

Many of us took years to figure out what was going on with us, that's why I'm encouraging you to test for lots of things from the start. Sometimes you have to get second opinions or third opinions...never be afraid to question a diagnosis or lack thereof!

Here at HealingWell there are forums for practically any disorder, and there are lots of friendly, knowledgeable people ready to help if you have questions.

Take care,
(((hugs)))
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/24/2010 2:31 PM (GMT -7)   
I've always found that it's more important to focus on telling the doctors every symptom, and visiting them without makeup as we suggest in the Lupus Resources thread at the top of the page.

Telling them what you think you should be tested for is a sure way to boobie-trap any kind of good communication before you even get started, as well as a good way to get labeled as a loonie who's issues are all in the head.

Stand back and let them do their jobs, but make sure you provide them *your symptoms* not what you think it might be based on friends, neighbors, or internet searches. A rhuemy has seen more by being in practice and seeing like people than you'll ever find by word-of-mouth or reading. (Why I tend toward drs who have been practicing their specialty 5+ years.)

Once they've taken a stab at it, if you still feel things are off track, you might ask about particular illnesses and if they might apply...but let them check for what comes to their minds -- by making suggestions too soon it's easy to muddy drs thinking so they can't make their own analysis and decisions -- after all, that is what they've trained years for and what you are paying them for.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/24/2010 5:00 PM (GMT -7)   
Welcome and sorry you need to be here. Make sure the rheumy you see is a lupus specialist and not just and ordinary rheumy. believe me there is a difference. A huge one.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/27/2010 10:40 PM (GMT -7)   
Lynnwood said...

Telling them what you think you should be tested for is a sure way to boobie-trap any kind of good communication before you even get started, as well as a good way to get labeled as a loonie who's issues are all in the head......by making suggestions too soon it's easy to muddy drs thinking so they can't make their own analysis and decisions -- after all, that is what they've trained years for and what you are paying them for.


Hi again, pteri,

Lynnwood is right about not "telling" your doctor.

I probably should have said to "ask your doctor if it would be appropriate to be tested for...." whatever, which is actually much closer to what I was trying to say than "tell your doctor".

But you probably have your own style of communication and are quite capable of bringing up issues without sounding overbearing or "loonie". I don't think that the first visit is too soon to talk about possible things to test for; I've had great conversations with doctors on the first visit if they were the listening type of doctor.

Always remember, you are paying them; they should be willing to listen to you without labeling you a "loonie".

Best wishes,
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com

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