Sjogren's Mom : Diagnosis

The First of Many

amop — Thu, 13 Dec 2007 01:18:00 GMT

I had my first visit with my primary OB this afternoon. Definitely exciting, and as my husband, my son in his winter suit packed into his stroller like that kid from A Christmas Story, and I huddled in a room with the sterile table, a bunch of rolling carts, chairs, and a large ultrasound machine we crossed our fingers that the news would all be positive.

When I first arrived I think they stuck me with a nurse-in-training. She had no clue. Thought I had already had all of my bloodwork. Failed to realize that the bloodwork was 2 months ago to confirm I was not pregnant...and wouldn't I be coming in for more than my first visit by the time I was 3 months pregnant? She weighed me (why do they do this then ask you to pee in a cup?). Good news was I wasn't as heavy as I was with my first pregnancy (yeah, I followed their instructions!). Bad news, I was about 12 lbs up from where I was in July at my annual for my pre-pregnancy check up. Oh well.

My blood pressure was normal for me (112/70), and everything else checked out. The nurse-in-training had me sign a bunch of forms and couldn't really explain them to me. With a fussy son and anxious husband, I scanned them - one was an HIV test which I checked "decline" on as I know I'm not. Not unless my husband's stepping out and if he has the time to do that he's a magician. I agreed to the first trimester screening...as the nurse-in-training told me that it was just through bloodwork. We'll come back to this conversation.

So here we are crammed into a rather spacious room chock full of equipment, tables, and all kinds of things you'd think they would be able to find a better way to store. My primary OB walked in and greeted all of us, and began to explain that she knew I was very insistent I be seen, and understood a bit as I had Lupus. Red Flag. Lupus? Well, it's an autoimmune disease with similar antibodies that cause similar complications, but the symptoms are different. So I politely corrected her, and she inquired how I was diagnosed and what I'd done in the meantime (who my rheumatologist is, etc.). Then she explained that it was early for me to be in for a visit - I'm 6 weeks 1 day. I explained that my high risk OB wouldn't see me until they confirmed my pregnancy. She couldn't understand why it was so important that I get in to see them so quickly as she would be doing all of the monitoring during the pregnancy. Second Red Flag. I explained what the high risk OB had shared with my husband and I back in July - that his practice would do fetal heart monitoring on a weekly basis from week 10 to 28 (at which point we would know whether the baby had any heart issues). She corrected me and explained that the monitoring was less frequent and would be done in her office. Huh? I acknowledged we had different information and it was important that we were both on the same page, so she copied me the notes she had received and I'm going to give the high risk OB a call tomorrow to discuss.

Either way, she went on to explain it was too early to hear heartbeat just yet, and too early to see anything with an ultrasound, so today's visit would be to get a Pap (baseline), my tests for all of the wonderful disease I don't have (see above regarding my husband), and then do an internal to check my uterus. At this point, my son got fussy, and my husband obliged and took him for a wheel around the office while the doctor swabbed me and did the internal. She commented that I have a tipped uterus (knew that, she actually told me that a few years ago) and noted that my uterus felt large enough that we might be able to see something on the ultrasound...so she gave it a whirl and invited my husband and son back in for the show. My son didn't really like it that the lights were off, nor was he thrilled there weren't cars or trucks on the "tv" screen, but it was fun to see the little black sack containing the baby...attached to the uterus where it should be. The interesting thing is that my ovaries are very swollen. Supposedly, the ovaries swell during the early weeks as they produce the progesterone that allows the body to maintain the pregnancy. After a few weeks, the swelling subsides. However, my ovaries were VERY swollen, so much that it explains the cramping I've had the past two weeks. I can feel it now as I sit here and type. It's kind of like menstral cramps. My ovaries are what she had felt while doing the internal exam, which is why she thought my uterus was so large. She explained that I need to take it easy until the swelling goes down - no strenuous activity (no running, lifting, etc.) as it may cause them to rupture, which would not be good. I'm going back in on the 26th to have my second ultrasound, so they'll take a look at them again and let me know what, if anything, needs to be done. Hopefully the swelling will be down and I'll be fine.

The doctor did ask me about my Sjogren's symptoms, and I had explained that I had attributed the cramping to not drinking enough. Here I am again in a situation where I dismiss symptoms of something because I think they're normal. You'd have thought by now I would have known better. At least the cramps were on my list of things to discuss with her! We talked about the thirst and dry eyes, as well as about the dry cracking skin. I've got sterile butterflies on my thumb covered by a bandaid as it keeps splitting open. Two weeks now and it's still not healing. I use so much hand lotion it's crazy. She did have a good suggestion - go see a dermatologist, so I'll ask my rheumatologist if she knows someone who works with Sjogren's patients (I have to set up my first pregnancy visit with her tomorrow as well).

The doctor reaffirmed that the primary thing I would be monitored for was fetal heartblock. However, I learned something new today - there's two ways to pick up on potential problems. The first we knew about - a drop in the heart beat from a normal beats per minute of about 120 to somewhere under 70. The second is a "static" heartbeat. What she described was that the beat would be within the normal range, but wouldn't vary much which would mean that the baby's heart wouldn't respond appropriately to activity or required changes in blood volume. Didn't know this, but at least they are both monitored non-invasively through a fetal heart monitor. She mentioned that the high risk OB would most likely do a level 2 ultrasound every few weeks to check on the baby's growth as well. Autoimmune patients tend to have lower birthweight babies...which she acknowledged would probably be nice for me considering my first was 10lbs 7oz. Additionally, I will periodically have non-stress tests to ensure that I'm still providing the appropriate environment for the baby's development. Depending on the results they may decide to put more restrictions on my activities in the future.

As long as there wasn't any problem, they would schedule my c-section at 39 weeks (a week before my due date). If the baby was a high birthweight or if I had any other complications (like gestational diabetes, pre-eclampsia, etc.) I would be scheduled earlier and would need an amnio the day before the section to confirm that the baby's lungs were properly developed. Wonderful. Let's continue to hope for the best.

Back to the bloodwork. So I had agreed that I wanted a flu shot (covering the bases), and that I would have the first trimester screening...which wasn't bloodwork. Huh? That wasn't explained. The nurse-in-training also didn't mention to me that if I decline the HIV testing, the baby would need to be prior to leaving the hospital. Nope, I'll take one for the team. I was supposed to jump out of my appointment and across the hall to have my bloodwork done, but the lab closed at 3:45pm. Who has those hours? I'll have to go out in the morning after breakfast with a bundled son and pray that he doesn't scream his head off as they draw my blood, or heaven forbid, make us wait 3 days in the waiting room in order to draw a few vials of blood.

For now my marching orders include not only to limit my exertion and prevent my ovaries from ruptering, but I also need to not lift anything over 25 lbs. Did I mention my son weighs about 32? Not so easy. He gets around just fine, and can do the stairs by himself with some assistance, but what about when he fights me to go up and change his diaper or take a nap? How about lifting him in and out of the car, carraige, and other places I need to get him into as I don't have the luxury of full time assistance (nor am I the type of person who can't fend for herself). This is going to be a fun ride. At least things look good right now, and there's just some miscommunication somewhere along the line that I need to work through. The doctor did agree that everyone needs to have the same information in front of them, so I'm going to call the rheumatologist tomorrow and forward my latest blood work to the high risk OB and my primary OB, then I'll call the high risk OB and ask that the summary that was sent to my primary OB be sent to my rheumatologist and me. Oh boy, coorindation. It was also good to know that the primary OB has a weekly meeting with all of the doctors where they discuss all of the high risk cases. This way all doctors are aware of what's going on, so if I see one of them, it's not a huge learning curve (or requires a great deal of time to read through my chart). Additionally, she recommended that I try and schedule my visits with just a handful of doctors in the practice so that there are several doctors familiar with my situation rather than a bunch of doctors who know just a little bit. I thought that was a good idea. We're excited, but just want to get through the first high risk appointment to make sure that everything's in place and we're doing all that we can to ensure a safe and healthy pregnancy and delivery.

How I Was Diagnosed

amop — Wed, 17 Oct 2007 17:19:00 GMT

Iâ€™ve been active and in great health all of my life â€“ I played sports through high school and college, went to all of my regular check-ups, and by the time I was married didnâ€™t really have any medical issues other than seasonal allergies. Iâ€™ve never been skinny, but by keeping active and watching my diet I was able to move from "slightly overweight" to "normal weight" on the BMI scale a few years prior to getting pregnant.

I gained about 10 pounds just getting pregnant (due to a higher protein diet - yes I was one of those Moms-to-be who was very conscientious about what I ate) and another 60 pounds with the pregnancy. I gave birth to a perfectly happy and healthy 10 pound 7 ounce baby boy in 2006 - it was a scheduled c-section as they knew he was "big." At my six week follow-up visit with my OB, I was strongly encouraged (as Iâ€™m sure every postpartum mother is) to lose ALL of the baby weight. Additionally, it was suggested that losing the additional 10 pounds I gained getting pregnant would provide me with the best starting position to ensure that I didnâ€™t develop gestational diabetes with any subsequent pregnancies. As such, I turned to Weight Watchers and grabbed my jogger to lose not only the 60 pregnancy pounds I had gained, but an additional 20 pounds.

Not having had an actual physical since I got married in 2001, I decided that I should get a full exam now that I had lost all of the pregnancy weight and was an active Mom. In March my husband and I both visited our PCP for an annual exam which included routine blood work. Although my cholesterol and iron counts were normal, the blood work came back with a high protein count which the doctor informed me in a follow-up call could mean hundreds of things. We waited six weeks thinking the results could be due to a viral infection and would clear up, and then I went back for another round of blood work. The second round also showed a high protein count, as did a third round six weeks later. As I wasnâ€™t exhibiting any symptoms and appeared to be perfectly healthy, my PCP referred me to a rheumatologist who would be able to determine what, if anything, was causing the high protein count.I saw the rheumatologist at the end of June and she did a FULL exam including a physical (walking, bending, general movement) and asked me tons of questions. I said I had noticed a few things on her giant list of questions in the months leading up to my visit â€“ fatigue, bruising, incessant thirst, dry eyes, and trouble sleeping through the night. I honestly thought these symptoms were just either Mom or nursing related types things that would eventually resolve themselves (I had just stopped nursing my son in May). The rheumatologist said it was tough to tease out whether or not these symptoms were related to being a new Mom as they are also symptoms of an autoimmune disease. As such, she ordered a more comprehensive round of blood work and had me schedule a follow-up visit a few weeks later to discuss the results.

My husband and I met with her in mid-July and learned that I do have an autoimmune disease. My blood work showed certain antibodies (SSA and SSB to be exact) that indicated I do indeed have a glandular autoimmune disease called Sjogrenâ€™s Syndrome. As this is typically not diagnosed until a woman reaches menopause (less that 15% of women are diagnosed prior to the age of 35 and women are 9 times more likely than men to have this), Iâ€™m VERY fortunate to find out so early â€“ especially since the symptoms I have were not all that noticeable (not bothersome enough to mention to my PCP during my annual physical).

My rheumatologist explained that some people are, for whatever reason, predisposed to autoimmune diseases. This does not mean that they will actually DEVELOP the autoimmune disease. What causes someone to develop the autoimmune disease is an environmental trigger like a severe trauma. She elaborated by saying that an autoimmune disease develops when the body â€œseesâ€ the inside of its cells due to the cells exploding from an infection or rupturing from a trauma (such as being hurt in a car accident). When the body â€œseesâ€ the inside of its cells, it begins an autoimmune response protecting itself against what it considers to be a foreign substance. In Sjogrenâ€™s Syndrome, it sends white blood cells to the glands causing them to become inflamed and ultimately, restricting their functionality. My rheumatologist surmised that the autoimmune disease I was predisposed for having (Sjogren's) was triggered during the c-section delivery of my son. At this time, there isnâ€™t enough information to understand whether developing autoimmune diseases is genetic, but supposedly most people arenâ€™t predisposed to autoimmune diseases, and most of those who are predisposed never have the disease triggered.

Iâ€™m still learning a lot about Sjogrenâ€™s â€“ especially the things I need to watch out for. Mainly, I need to watch my stress level, as emotional or physical stress will put the disease into overdrive. Besides the fatigue and having dry eyes and mouth, Iâ€™m at an increased risk for cavities, as well as kidney, liver, heart, and glandular diseases (including lymphoma) so Iâ€™m trying to become educated on how this is going to impact me long term. Thereâ€™s no reversing the symptoms I have now, but there is a medication called Plaquenil I can take (for the rest of my life) to slow or even stop the progression of my current symptoms and the onset of others.

Why I Started This Blog

amop — Wed, 17 Oct 2007 00:13:00 GMT

Well, as you can tell from the name of my blog and my home page, I have a disease called Sjogren's Syndrome. Yes, some disease named after someone whose name nearly no one can pronounce on first try. Most people I've told ask, "how is that spelled?" I work well with examples, so here it goes - sounds like SHOW GRINS.

I know of one other person who has this disease - and it's not someone my age. Additionally, from everything I've heard from the rheumatologist and the high risk obstetrician I saw, I'm in a select group of women - those who have Sjogren's and are trying to get pregnant. Thus, the inspiration behind my blog. It's a way to share with my friends and family what I'm going through on a frequent basis, as well as reach out to other people who have an autoimmune disease or know someone who does and share experiences and information.

I've got quite a bit of digestion that has to take place, so with some patience and some non-existent free time, I hope to become educated about this disease and enjoy a symptom free (or reduced) remainder of my long life.