Discussions By Condition: I cannot get a diagnosis.

No Diagnosis...Rheumy MD blew me off...

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: CincyMomOfTwo
  • July 22, 2009
  • 04:37 AM

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, even the ANA titre. 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.

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9 Replies:

  • So sorry you are being treated this way. Typical doctor and more than likely male doctors. Historically they don't often take women patients seriously with a multitude of symptoms esp. if blood doesn't always back it up at the moment they look at it. But irregardless of that, it's wrong of him to treat you that way and you know it, so honor your instincts and trust what you're feeling. Sounds horrible.... keep pushing and looking for someone to take you seriously and find out what is wrong. I have read that you have to have a flare up for a lot of autoimmune disease for them to show up on blood. SO find someone who takes you seriously and if not then write to the Mayo or Upledger clinics or at least the AMA and complain about it. Sounds like you have something but they aren't able to willing to commit to finding out what it is and then diagnosing it properly when you have another flare up. Start documenting your pain, like a journal(my mother suggested I do the same and it's a good idea). that way you have it all documented...in that write days, times hours, triggers if you are able to figure them out, it may take awhile but try and notice what sets them off. Write down what you ate, did and felt like because stress and food can trigger episodes of a lot of disorders. You will start to notice patterns believe it or not if you already haven't. Find a group of people suffering from disorders like fibromyalgia, RA, lupus and others so you can get some support. Good luck and hang in there! You are not crazy....know that throughout medical history women have been treated like ninny's and idiots simply because they society didn't take women seriously and certainly not in the medical world where the root word of many of our problems is HYST....anyways. take care and good luck! Sisters in struggle for our lives. :) remember if someone blows you off and you are sure about what you feel or think, then they are not worth sticking around for and convincing of your worth. move on and find better people to surround yourself with and get help from. check this out: asked on wiki answers but it's from a lot of sources: Women have hysterectomy from the word hysteria men have orchidectomy from the word orchid How do these different terminologies reflect how diseases of men and women are viewed?I am not sure about the orchidectomy. I would imagine the orchid has something to do with the appearance of male anatomy. However, here's some history on the word Hysterectomy:"Hysterectomy" is the surgical removal of the uterus (womb). The word "Hysterectomy" (termed in 1879) comes from the root word "hyster" referring to the womb and "ectomy" meaning removal.The reason the root word "hyster" refers to the womb is derivative of the word "hysteria" based on the sexist assumption that the womb itself caused uncontrollable, emotional behavior.Subsequently, 19th century and early 20th cent physicians performed "pelvic massages" and prescribed vibrators as a treatment for "Female Hysteria" and "hysterectomys" for severe cases. Female Hysteria was thought to be a real, psychological disorder in women until the 20th century.
    Anonymous 42789 Replies Flag this Response
  • You might want to check about Calcium Pyrophosphate Disposition Disease- it's an issue where "Crystals" form in the joints. Tends to affect primarily geriatrics, but there is some instances when younger folks are affected due to a sudden drop in "serum calcium" levels - a severe case of dehydration, surgery, etc. I found one article that linked it to TMJ. Good luck.
    Anonymous 42789 Replies Flag this Response
  • Hello there. I posted a while back with very similar symptoms. I am so sorry you are going through this. I on the other hand have come back with a positive ANA and Positive ENA. I have not had large amounts of hair loss recently nor crystals in urine(though noone has checked that). Do you also have swollen lymph nodes? I have several of those. I am waiting for an appt with a rheumatologist. IF you read up on ana tests then you will see that many people have false negatives and that may be the case with you. I have had the intermittent joint pain for years but always assumed that it was normal aches and pains until my neck and spine joint locked and I had little to no movement. I was diagnosed with fibromyalgia about 5 years ago but that does not explain the flushing and the night sweats. the jaw pain can be quite severe at times? Do you also get a sharp pain in your jaw when you drink tart drinks or alcohol and then smile? That is by far one of the worst sensations I have ever experienced and I have had 3 children.Any persistent heartburn? Anyway..I would be very happy to hear anything your family Dr suggests. take care of yourself. strangely, my symptoms showed up shortly after my second daughter was born and then became worse post partum with my 3rd.
    Anonymous 42789 Replies Flag this Response
  • I have noted a regular pattern of poor communication skills in doctors resulting in posts such as this. Please understand, this isn't your fault. It is your right as a patient to demand to know what your doctor is considering and to explain things to you properly, even if all the findings are negative. If you are not satisfied with your doctor's explanations, please demand a copy of your medical records and do your own research and see another rheumatologist with more patience and forebearing. Another suggestion is to call your family doctor and have him/her obtain the records from the rheumatologist and explain the results to you at your next meeting. The issue of ANA can be confusing. A positive ANA can be associated with many conditions including lupus, rheumatoid arthritis, Sjogren's, scleroderma, vasculitis, various systemic inflammatory diseases, and even drugs. A positive ANA, therefore, is quite nonspecific. It is generally used as a sensitive screening test for various conditions. If found positive, more specific tests are required for diagnosis. ANA, by itself, is not very useful without the clinical picture. Also note that the Rh test you mentioned is a test like a blood group test (useful during pregnancy), and does not indicate presence or absence of any disease. Your symptoms definitely require a thorough rheumatologic/neuromuscular evaluation. It is likely that your rheumatologist did not find any pathology, and, assuming your symptoms to be psychological, dismissed you without proper explanation. I am also quite sure your physician has already tested you for thyroid problems. Recommendation: Call your family doc to obtain records from rheumatologist. Review results with family doc at next visit. Also note, yours is one of the few cases on this forum that may require evaluation for Lyme's disease (depending on where you live and possibility of exposure) using a Western blot test. You may want to speak to your family doctor whether this is indicated.
    m3dh31p 69 Replies Flag this Response
  • Correction: By RH Factor, you meant RF (rheumatoid factor). Disregard comments about Rh test.
    m3dh31p 69 Replies Flag this Response
  • Hi i just wanted to say i have just read your post and its almost like listening to myself. I am 33 and I havent felt well for nearly a year and the rhuematologist basically dont know whats wrong with me and have made me feel that most of what i tell them is either in my head or not enough symptoms to treat. but i too have experienced most of those symptoms you have mentioned. My full blood count is normal -ish and I have showed a slight ana positive result two out of three times.They said they would need to keep an eye on me over the next couple of years, Im a mum of a three year old and a full time job. I have to say I dont know how I am going to cope if they cant help me with the pain and discomfort i have .I have read though that you can have low grade connective tissue disorders in which you may experience symptoms of SLE and those types of diseases and that if they can be treated by a low level of medication like what people with full blown symptoms have they can sometimes reverse the problem or stop it getting worse. This has not been offered to me yet.All i have been advised is to take over the counter meds that dont have any effect. I worry that while they are wasting time with guess work i the ana symptoms are destroying me. I have joined a lesiure centre and i am going for gentle swims and saunas and looking at my diet eating veg everyday and researching herbal supplements, which after you bf might be good for you.I have decided by trying to help myself I might be able to put back in some goodness.Also keep a diary of when things happen more. Listen to youself and dont give up, also try to be positive. Quick background: Also your GP can arrange a second opinion, that is what i did when my second ana test came back negative and a particular consultant wrote me off and claimed there was basically mothing wrong with, my current one is a bit better in that he hasnt done that yet. This can take over your life but dont let it make the most of days that are not as bad or parts of the days.Wishing you all the best. 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, even the ANA titre. 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.
    Anonymous 42789 Replies
    • October 7, 2009
    • 10:30 PM
    • 0
    Flag this Response
  • You might want to check about Calcium Pyrophosphate Disposition Disease- it's an issue where "Crystals" form in the joints. Tends to affect primarily geriatrics, but there is some instances when younger folks are affected due to a sudden drop in "serum calcium" levels - a severe case of dehydration, surgery, etc. I found one article that linked it to TMJ. Good luck.That's a stretch, but I suppose an ultrasound of the joints to look for deposits would be the safe way to play it.What you have is giant cell arteritis with polymyalgia rheumatica symptoms. What gives it away is the hair loss and red face. GCA causes cranial artery abnormalities, which would cause those two symptoms, and also responds very quickly to corticosteroids, like cortisol, which you just happen to produce during pregnancy (sound familiar?). The best way to confirm this would be a temporal artery biopsy, but since that may be too invasive start with ESR (>100mm/hr suggests positive biopsy,=50mm/hr confirms diagnosis), CRP (elevated), CBC (normal WBC, elevated platelets), and LFT's. Auscultation of the carotid and brachial arteries may reveal bruits, but they wont appear without large vessel involvement, so it's 50/50. While your waiting for the results to come back start a corticosteroid regimen for the pain.
    SWaterstradt 6 Replies
    • October 8, 2009
    • 10:25 AM
    • 0
    Flag this Response
  • You might want to check about Calcium Pyrophosphate Disposition Disease- it's an issue where "Crystals" form in the joints. Tends to affect primarily geriatrics, but there is some instances when younger folks are affected due to a sudden drop in "serum calcium" levels - a severe case of dehydration, surgery, etc. I found one article that linked it to TMJ. Good luck.By the way, pseudogout isn't caused by a drop in calcium levels. Normal serum calcium levels are expected, also how can a disorder caused by too much calcium be precipitated by low calcium...?
    SWaterstradt 6 Replies
    • October 8, 2009
    • 10:35 AM
    • 0
    Flag this Response
  • If I were you, with those symptoms, I'd look into chronic Lyme. Bartonella is one of the coinfections, and you have lots of bart symptoms,too.
    kermworm 81 Replies
    • October 8, 2009
    • 11:43 AM
    • 0
    Flag this Response
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