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View Full Version : Need some direction for upcoming MD appt.



CincyMomofTwo
07-21-2009, 10:11 PM
Quick background:

I'm 31 yrs old, 3 months post-pardum.

2 years ago, symptoms started with night sweats then inflamation/pain in back and hands. Hips often feel like they could pop out of socket, occational intermitent knee pain. Positive ANA test, though not done in titres. Hip pain during intercourse and occationally during walking. These symptoms persisted for 1.25 years until I became pregnant.

During pregnancy pain and inflammation went away. Only possible symptoms during pregnancy were red, flushed face that would come and go. I also tested positive on my ANA titre during OB panel (OB tested for RH, ANA, and others due to previous symptoms). OB said we would just be careful during pregnancy incase I had AI disease; needed to meet with Rheumatologist postpardum to discuss. I experienced preterm labor and was on bedrest for 8 weeks. Only gained 16 pds. I also experienced gallbladder "sludge" which has since left with no lasting effects.

About 6 weeks postpardum (currently 13 pds under prepregnancy weight), different symptoms started popping up, starting with night sweats. Then started the joint pain and stiffness. I guess you could say I have fatigue. A nap a day is a must. The most severe in my knees, but also in my wrists, hands, and ankles. Upon waking, I am very stiff and it works itself out. The pain with getting out of chairs, up stairs, etc is almost always there. If I nap, I wake up feeling sort of frozen due to joints. Then the lovely symptom of hair loss showed up. My jaw has also been very stiff and poppy...like TMJ? I am awefully bruised up and I am also experiencing intermitint dizziness. I am aware that some of these sysptoms might overlap into a postpardum issue or they might not. Ibuprophen not even touching the pain and discomfort. Pain is pretty bad that I cringe at stairs, having problems getting down to bath daughter. Finally, gave in to see family physician for referal to rheumatologist.

Symptomatically, rheumy thought I had Lupus so we did a ton of blood tests. Went today and was told they were all negative. I do not know all of the tests she ran but they took like 9 vials of blood. The rheumy basically made me feel like I was crazy but I know that at least the joint pain, hairloss, night sweats, and jaw issues are not in my head. She also made it seem like she couldn't do anything for me medicine wise, which is annoying as I made it CLEAR that I didn't want to do meds at this point as breastfeeding is important to me. I just want to know what is wrong with me so maybe I can do something right now or have a plan of actionfor the future when BF is done. The only thing that came back elevated ever so slightly was related to my liver and crystals in my urine. I am not sure all of the tests that she ran but most were related to lupus, AI diseases, RH, and then to liver and kidney function. Not that I wanted lupus or anything aweful, but the rheumy just basically wrote me off with anything she has to do with without even giving some other ideas as to what it could be. I guess I just wanted a diagnosis. I'm sort of at a loss considering I thought that your ANA can fluctuate and RH factor can be negative for some for many years. Heading back to family doctor to see what we want to do next.

Any insight would be helpful. I wanted to be able to ask knowledgable questions to get some sort of direction with family MD. PS...sorry if sort of jumbled but my thoughts right now are all over the place after the frustrating MD appt.

Rastagirl
07-21-2009, 11:28 PM
Hello CincyMomofTwo..... :wavey:

Just wanted to welcome you and let you know that YOU ARE NOT CRAZY! I hear almost this same story again and again, day after day on this site. There seems to be so many many people that are suffering very similar symptoms as you, yet the doctors they see cannot nail down a diagnosis. I'm really sorry you're going through this and suffering so much....especially when this should be a time of joy and happiness after the birth of a child.

I'm Lori and I've had Lupus for 27 years, diagnosed at age 18. I don't have any concrete answers for you, but I wanted to let you know you are not alone. Right here, right now this moment....I care. My heart aches when I read these messages night after night, and I wish there was something I could concretely do to take away your pain and to offer you some reassurance that it's going to be okay. I wish doctors would be more sensitive and caring about the feelings of their patients....their fellow humans. But unfortunately, that just doesn't seem to be the case with most of the doctors we hear about on here. Gentle hugs to you for all of this, especially being brought to tears in front of a doctor that is supposed to be helping you.....with no comfort offered at all.

I'll share a few things that sound similar to what I've gone through with my Lupus. When I got pregnant with my first child in 1992, I had been having tremendous hip pain due to being on long-term Prednisone. I was approaching a hip replacement. As soon as I got pregnant, my hip pain, in fact all my joint pain, totally disappeared. My high-risk OB believed it was because during pregnancy, the joints normally relax a bit and provide a bit more flexibility. Very soon after I delivered my son, the hip pain, and other joint pain, returned with a vengence. During my worst times with active Lupus, my joints that were affected the most were my hands, wrists, knees, hips and ankles and toes. It was unbearable at times. And my joint pains seemed to randomly move around my body from day to day. Every few mornings, they would be in different joints. I've most definitely had the night sweats, terrible at times, and hair loss and easy bruising, and dizziness and headaches. I've been through 2 pregnancies, and each time I felt better during the pregnancy, with many symptoms returning postpartum.

What I would do is go back to your MD and let him/her know that these symptoms you are having are real, and you do not want to give up until this can be figured out. And if you're not already doing it, you should start keeping a journal or record of your different symptoms, the time period they occur, and any information that will help your doctor understand what's going on with your body. Also, many people on this site have had to seek 2nd and even 3rd opinions from Rheumatologists to find one that will listen and do their job of investigating properly. Do not give up....you know yourself...your body....better than ANYONE and you know this is not in your head. So do not give up. Keep at the doctors...ask for tests to be run again, or ask that they consider ALL possibilities and investigate all avenues in order to help you figure out what's going on.

I feel like I'm rambling on a bit...I just wanted to let you know that you are not alone....and now you've find a site with understanding, compassionate people that will always be here to listen and support you as you travel the road to diagnosis. Be strong....I know it's hard when you hurt so much and you're so tired and you're trying to be a new mom....but you cannot give up your fight. We will be more than happy to pull up alongside you and give you all the support and kindness you need to make it through.

Please know that I care.....and I'm here to listen. :heart:

Fondly,

:cool2: Lori

Danica01
07-22-2009, 01:09 AM
Welcome to our family! You have come to right place. You have come to a place full of unconditional love and support. You will read so many stories like your own and you will realize that these things are not just happening to you and this will allow you to feel a little less lonely.

It is actually proven that some women with Lupus respond very well to Lupus. Some women even go into remission during this time......I think it has something to do with the hormones. I am happy this happened to you and you were able to have a pretty good pregnancy.

I agree, start keeping a daily journal of your symptoms, how you sleep and even what you are eating. I will go into the doctors office with a huge list of questions in my head and it never fails.....I always forget things! Now I write down questions as I think about them and then take the list to the doctor and I can actually check them off as I receive the answers. I also ask Tim if he has any questions for the doctor because I know our loved ones are affected by our disease and it is good for them to get some answers too. Another thing is to take a pad of paper and a pen into the room with you....you can write down what the doctor says and this way you can go home and think about it all. They always pass on so much information that I just feel overwhelmed and then when I get home I forget what he has said. You also take in a recorder to record what he is saying. These are just a few ideas. Some may work for you and some may not. Find what is comfy for you and just keep that up.

Good luck with the doctor and please keep us posted on how it all goes and the answers you get! I am sending you peaceful thoughts and lots of gentle hugs :hug:

CincyMomofTwo
07-22-2009, 08:26 AM
Thanks for the support. Yesterday, I was at wits end. I was nervous about finding out the results and devistated (if that makes sense) when I got them. I think the rheumy's delivery and lack of compassion really was the worst for my husband and I. It gets so confusing to read one thing on lupus websites and have the physician tell me something completely opposite.

So, from your knowledge, can ana titres vary during cycles? What if the other lupus tests come back negative? Should they always be positive for a diagnosis? We were wondering why she didn't run other tests to try and rule out other possible diagnosis. From what I read, sometimes a lupus diagnosis is given if you have 4 of the 11 symptoms and a titre above 40 even if the other tests come back negative if they rule out other issues like vitamin deficinancies, lyme disease, etc. I guess it just wasn't exciting enough for her.

I feel like I should be on TLC's Mystery Diagnosis :) I do have a prescription for prednisone. I have not started taking it. The only reason I have not is due to breast feeding though my OB just gave the all clear since it is a low dose.

I really appreciate the support...nice to know some people, besides my family and friends, don't think I'm crazy. My DH makes me feel better by saying "being a doctor" isn't a 100% science or they would not call it "practicing" medicine. I guess a different doctor could make a difference.

magistramarla
07-22-2009, 12:07 PM
Hi Cincy and welcome to our family,
Does your handle mean that you are in Cincinnati? I used to live in Dayton, near Wright-Patterson AFB. We loved Ohio.
Your story sounds much like mine. It took three years of many tests and seeing several specialists before I got the diagnosis of Mixed Connective Tissue Disease. My first Rheumy refused to treat me for anything, since I didn't test "high" enough to suit him. My new rheumy says that since I was mildly positive for several things, the cumulative effect was reason enough to treat, and she's helping me a lot.
I also was a breastfeeding mom - I nursed five babies, two years each. I always felt great when I was pregnant and/or nursing. (Wow, now it's been 22 years since I had my last baby). I think that I had a few mild symptoms of autoimmune problems, even back then, but those "Mom" hormones sure made me feel good. I was also a La Leche League Leader. Have you heard of them? They often have good medical liaisons, too, who might be able to answer some of your specific questions about drugs that are safe for both of you.
Good luck, and enjoy that baby,
Marla