Discussions By Condition: I cannot get a diagnosis.

A pandoras box of symptoms...

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • May 26, 2009
  • 08:55 PM

First off let me just say that not one Doctor I have come across has looked at my symptoms as a whole and I am incredibly frustrated by that, as I am starting to believe that all these symptoms are connected.
While I was pregnant with my 2nd daughter I began flushing in the face but it would come and go and I did not think too much of it. thought it was a pregnancy thing. after about 5 months postpartum the flushing became permanent and my face was always red. I went to a dermatologist and was diagnosed with roseaca. At around the same time I started becoming nasueas and had painful heartburn constantly as well as chronically fatigued. The only thing that would stop the heartburn would be to drink apple cider vinegar or lemon juice. My Dr did a TSH and checked my iron and all was good. I asked her to run some further tests to see if my flushing was anything more serious and an ANA of 1:10 came back with a speckled pattern. I was sent to a rheumatologist and then told I looked good so not to worry. things seem to be fine except the fatigue and the now chronic sinus infections. I get pregnant again 3 years later and the flushing begins again. About 3 months postpartum my milk supply disappears, incredible upper back pain in the middle of my back and serious fatigue. The back pain is apparently heartburn and seems to settle down after I end up in ER and take ulcer medication. 5 months postpartum and I start sweating profusely and it smells different to me.I notice large lump on my chest and dr says it is calcium deposit. 7 months postpartum and I start having night sweats and losing weight. At 10 months postpartum I notice 2 small, soft swollen lymph nodes on the lower left cervical chain, one is pea size and the other is oblong and about 2 fingers wide. The dr gives me xray and CBC for night sweats. nothing comes back and she says lymph nodes are normal and probably allergies. I have now noticed my sense of smell and taste are different. sweet is too sweet and salty too salty...and the smells of cooking are awful. I can only eat half of my normal plate of food before becoming painfully full and drinks fill me up. I continue to flush but mostly around ovulation and IPL laser therapy helps with that. Now at 12 months postpartum I have noticed another swollen node on my right side of the cervical chain but mid neck and one on the bottom of my collarbone. Both are pea size. when I lay down, I now notice the right side of my ribcage is higher than the other side and it is painful and feels heavy there. Around christmas I was having heart palpitations that I was told were very normal if not a little distressing.
I have lost 30 pounds in 9 months with no dieting or exercise.I have random, intermittent intense itching on my legs and inside my ears that wakes me up and I scratch until my skin bleeds. I am tired all the time. I feel like this is all connected and I am fighting something. I have gone to my Dr several times but I feel like I am getting no where cause the x ray and cbc came back normal. I live in canada and cannot go to a specialist without a referral though I wouldnt know who to go to anyway. I am too young to feel this awful. Any Dr's that could offer advice? I have not had a night sweats for a couple of weeks, those are pretty random as well.
any help from a Dr, or any kind of help is appreciated. I have seen a few Dr's and noone is concerned and everyone treats me for the specific reason I am there. Am I crazy and are all these symptoms random or should I be more concerned and fight for more testing?

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7 Replies:

  • Concerning indeed. How long do these swollen gands last? Any long term medications? Anything in your environment change (drinking water, etc - possible long term effects from environmental toxins)? There are certainly a lot of complications related to childbirth. Did either of your parents have Rosacea?
    Anonymous 42789 Replies Flag this Response
  • Anyone? thoughts or clues? please offer any experience or help if you are able. I need something concrete to take to my Dr. thank you for any help or suggestions you can offer.
    Anonymous 42789 Replies Flag this Response
  • have you considered mast cell disease or mastocytosis, flushing is a sign of this
    Anonymous 42789 Replies Flag this Response
  • I have never heard of those two things but I did look them up and I do seem to have a lot of those symptoms. I have an appointment with the dermatologist tommorow and he is going to do a complete check of my upper body and face. he at least is willing to consider that perhaps I am dealing with more than just rosacea. Noone in my immediate family has rosacea though we are of irish descent and we are prone to redness. As far as the swollen lymph nodes I have noticed them for the last 3 months, they have not gotten any bigger but neither have they shrunk at all. this past month I have found more lumps under my collarbone on the right side, all ranging in size and they seem to get bigger as they move under my arm. I also have had an increase in the choking feeling and feel a tightness in my chest and the sensation of being unable to get enough air in my lungs. I just want to thank you so much for reading and replying to my post. This has been a difficult time and I just want to feel better. It is very Hard to get better when the Dr's just treat you for each symptom and move on. I would pretty much have to be on my last breath before I go back to my family dr. to complain of all this since the last time she made me feel like I was wasting her time. thank you again:)
    Anonymous 42789 Replies Flag this Response
  • First i'd change doctors if she's not being cooperative.Then request a Lymph Node Biopsy.It sounds to me like you could possibly have estrogen deficiency(flushing,night sweats,changes in taste,palpitations) with some sort of bacterial infection(itching).Have you have estrogen levels checked?Even if they are ok that doesn't necessarily mean that your not deficient in estrogen as sometimes the lab ranges are too wide.It does seem to be hormone related especially since it began during your time of pregnancy when hormone levels change.Do you have any of the following symptoms:thirst during the night,vaginal dryness ora dry tongue or with cracks on it like the following:http://farm4.static.flickr.com/3274/2532516573_3b534d213d.jpg?v=0or a very red tongue?http://www.ip9.org/tenzin/tcm/beyondwellbeing.com/tonguez/111.gifHeres an article regarding estrogen deficiencyhttp://images.google.com.au/imgres?imgurl=http://www.aafp.org/afp/20000515/3090_f1.jpg&imgrefurl=http://www.aafp.org/afp/20000515/3090.html&usg=__WflA4JGtm1PHpCSvJMcWOQ6JJSo=&h=240&w=191&sz=31&hl=en&start=19&um=1&tbnid=MYAlw89gUJmKuM:&tbnh=110&tbnw=88&prev=/images%3Fq%3DVaginitis%26hl%3Den%26client%3Dfirefox-a%26rlz%3D1R1GGGL_en___AU313%26sa%3DN%26um%3D1
    Anonymous 42789 Replies Flag this Response
  • Summary of symptoms, signs, and tests:facial flushing -- diagnosed as rosacea -- postpartum, around ovulation, relieved IPL lasernauseaheartburn--relieved by drinking apple cider vinegar, lemon juicechronic fatiguechronic sinus infectionslump in chest--calcium depositnight sweatsweight loss 30 lbs in 9 monthsleft cervical lymphadenopathynow lad right sidealtered sense of smell and tasteearly gastric fillingright ribcage higher than left, painful, heavy (?)palpitationsintermittent intense itching leg and ears--scratching till bleeds, wakes from sleeplumps under collar bone, arm chest tightnessCBC normalX ray normalTSH, iron normalANA 1:10 speckled patternYour symptoms are quite varied and, unfortunately, do not suggest a single diagnosis without further investigation. I do agree that a physician should look at all your symptoms together and try to arrive at an appropriate diagnosis by performing a rational set of tests to rule out any serious condition. Some of the differentials that come to mind initially include the following, in no particular order:Endocrine--estrogen, VIP, serotonin (carcinoid)Infectious--tuberculosisHematologic--anemia, leukemia/lymphoma (normal CBC possibly rules out?)Pulmonary--lung ca, metastatic lung ca (ruled out by chest Xray?), interstitial lung diseaseGI -- gastritis, gi tumor/malignancyHepatobiliary--flushing, pruritus --> LFT, antibodiesRheumatologic -- lupus etcImmunologic --acquired immunodeficiency?I don't mean to alarm you with some of the serious conditions I have listed; it is possible you may not have any of them, but I think a physician should seriously consider ruling these out. I do not know what your physicians have already ruled out with blood tests and xrays, as that is rather nonspecific. I would advise locating a good internist who can take your complete picture into account and run the proper tests based on his/her clinical judgement. Also, please do not consider this medical advise, but an opinion. Follow your physician's instructions, but feel free to take charge of your health and get a second opinion if you think you need it.
    Anonymous 42789 Replies Flag this Response
  • Thank you so much for all the replies. I went to my dermatologist and he was unable to comment on all symptoms but decided to do another ANA test and ENA test to further test for autoimmune disease. He is fairly confident that my flushing is due to rosacea but I am less confident in that diagnosis. I appreciate all the suggestions and will talk to my family dr. about these suggestions. She is a good Dr and I think if I present all my symptoms to her like the person above me did she may realize how concerned I am. I might try and print off the above post and see what she says. I do admit that all those conditions sound a little distressing. When you mention acquired immunodeficiency are you suggesting HIV? I have been tested for that with my first pregnancy and that was negative and I am not in a high risk category(no drugs, married for 10 years, no blood transfusions). I had a TB test 10 years ago and that was negative and 2 recent x rays were clear. Would that rule that out? My cbc was tested as well as ferretin(spelling??) so I think that rules out anemia. My TSH and FSH have been tested as well so I think that rules out perimenopause and thyroid issues. sigh...I am on 2 months of antibiotics (as directed by dermatologist for rosacea) and I will see if that brings down the swelling in the lymph nodes. I realize that is not why he put me on them but it may help. I think I have the fear of cancer looming over me and I am just afraid it is being missed. I need to go back to my Dr and tell her that the lymph glands are still swollen as it has been 3+ months at this point. So I am going to print this off and leave it in her hands. I live in Canada so I am not able to contact specialists without a referral from my family dr. I do thank you so much for your time and thoughts:) It makes me feel better to think that I am not alone in thinking that my symptoms could be connected. good health to you all:)
    Anonymous 42789 Replies Flag this Response
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