Discussions By Condition: I cannot get a diagnosis.

In need of some ideas or a possible diagnosis

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: DizzyUp
  • May 1, 2008
  • 02:59 AM

Hi everyone,
For the past 3 weeks or so I have had tender swollen lymph nodes in my neck and back of my head, rapid heart beat, low-grade fever, loss of appetite, occasional diarrhea, clear mucus from my nose, and scalp tenderness on parts of my head. I have been to my doctor twice, the ER twice, and after many tests, they still do not know what is causing my symptoms. I have had chest x-rays, CBC blood work, blood cultures for bacteria, mono testing, Lyme, urinalysis, and all of which have been negative for anything. I now also have some swelling on my upper eyelids and they are sort of puffy.

At the onset when this all started, it felt like someone had applied Icy Hot or one of those muscle ache creams on my back and the sensation moved to different parts of my body.

The doctors seemed to think I had an upper respiratory infection and I was put on Avelox and now I am on amoxicillin. I am still not getting any better and I would really like to know what is wrong. I am 29 years old and have never had anything like this in the past, nor have I been around any sick contacts.

Some days I will be doing fine and seem to be getting better, then a few days alter I am sick again.

They did more blood work today and are now checking for viruses, etc. I am really scared and I wish someone could help me find out what is wrong.

Many thanks

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8 Replies:

  • I'm so sorry to hear about what you are going through. :( A few thoughts:Have you been tested for the Cytomegalovirus (symptoms are similar to EBV/Mono)? Is there an insect bite or were you bitten on your scalp or back prior to your symptom onset? I know you mentioned that they tested for Lyme but I wasn't sure if they ran tests for other insect-borne illnesses. My one other thought (though probably unlikely) is the possibility of osteomyelitis. Has your physician considered doing a biopsy of one of your lymph nodes? Best of luck.
    GD2005 61 Replies Flag this Response
  • Forgot to mention...if you haven't already, you may want to look up "Fever of Unknown Origin." There are several articles online that give potential underlying causes of fever when typical testing comes back normal.
    GD2005 61 Replies Flag this Response
  • I think I am going to have them retest for mono. I found a website today that had a few of the symptoms that I did now know about including "Supra-orbita oedema —the eyes become puffy and swollen—may occur in the early stages of infection" and "rapid heart beat" (both of which I have) I have heard of people testing 3 or 4 times for mono until they finally get a postive test. Thank you everyone for your replies. I am still waiting on results of tests and hoping for the best.
    DizzyUp 3 Replies Flag this Response
  • This could possibly be the early stages of chronic thyroiditis. I imagine they have already checked your TSH and other thyroid hormones by now. If not, you may want to ask them to check them. I had normal hormones for years, however, and my thyroiditis was only picked up after they checked thyroid antibodies (to thyroglobulin and thyroperoxidase). Normally, antibodies are not checked until after your hormones are off, which is why my illness went undiagnosed for almost a decade.Best Wishes
    Anonymous 42789 Replies Flag this Response
  • Yep, I say thryoid as well...sounds suspicious to Graves Disease....but you may also want to be check for Hashimotos as well....autoimmune disease of the thryoid. Check antibodies for the disease as well as FT4, FT3, TSH (0.3-2.5 is the NORMAL range not up to 5.0 like some doctors like to say). With treatment you can be feeling much better. Joan
    Joan5555 316 Replies Flag this Response
  • I had a follow up today with my family doctor and my TSH levels are 1. something so they do not feel it is my thyroid. I am still sick and awaiting consultation from an internal medicine doctor :confused:
    DizzyUp 3 Replies Flag this Response
  • im going to mention the following for future referance for you in case you start getting more symptoms come in eg exhaustion, memory issues etc etc, thou at this point i wouldnt be thinking that it's this!! (only consider this if you get more symptoms and your doctors are at a loss, so dont go worrying about this right now).. but the following can initially start out with your symptoms (viral like strange symptoms) and is a common way for it to start (it can cause swelling too). chronic fatigue immunity dysfunction syndrome (CFIDS) (file this info away in cause months down the track you are no better and still seeking a diagnoses!... at this point, I dont even recommend you research this issue as it's just too early and right now, you didnt mention or have enough symptoms).
    taniaaust1 2267 Replies Flag this Response
  • Thank you everyone for your relpys. I was at a different ER today as well as a different family doctor. Still no answers and I have normal blood workups. Right now I am still having low grade fevers, occasional elevated pulse, no appetite, neck pain, tingling on the left side of my face, tinlging in my scalp, occasional jaw pain, and occasional soreness in my head (where your jaw muscles would go up into your head). The family doctor scheduled me for a CAT scan of my sinuses and brain for later this week, another Lyme titer, and also a ultrasound of my abdomen/pelvis. I have had this since around April 15 or so and it is really worrying me that these doctors do not have a clue what is wrong.
    DizzyUp 3 Replies Flag this Response
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