Confused & Frustrated

[Totie]

I seem to be a very complicated interesting patient. My current symptoms for the last year are:weight loss (30lbs in about 18 mos-weigh 97lbs). / chills / night sweats / thigh muscle pain / right arm only muscle pain / swollen inguinal lymph nodes.Three weeks ago I had blood work done by my PCP, All CBC blood work came back normal. I did However,  tested positive for EBV & TB (weak positive). The chest x-ray was perfect. I was okay to return to work. I know just about everyone has been exposed two both of these and will test positive if ever exposed. I do not have symptoms of mono (no sore throat, no fever), never have. My PCP wants me to see an infectious disease doctor due to the night sweats/ weight loss/chills/ groin lymph nodes. He tells me my body is fighting an infecton due to the night sweats/weight loss/chills, but he can not tell me what. I have had all kinds of tests done and WBC is always normal.  What would an infectious disease doctor test for that has not already been tested for by my PCP? Are night sweats an indication of an infection going on? I have been tested for early menopaus, my gyno tells me I am perfectly fine in that area, no indication of it coming early. I have already had two lymph nodes, a calcified ligament, submandibular gland (chroinc sialdentits), thyroid(graves disease), a mass in the midline area, a mass in the neck, my left ovary with complex cyst removed. I have dealt with oral thrush, an abscess with 2 different infections in the pathology report, and also intesterial cystitis (IC). My question is would all of these things be in anyway related, or is it just me getting old? I am 38 (f). Would an infectious doctor be able to help in anyway, or am i just wasting my time and theirs? I am tired and frustrated in dealing with these issues with never getting any answers. I have pretty much accepted that this is how my body is? Are the night sweats normal and should I pursue or not?

[Super_sally888]

Hi,

TSH of 5.9 is too high.  You may need to increase your thryoid meds. Generally a TSH of less than 3 is now standard and many people feel better if their TSH is close to 1.0

S

[Totie]

If i tested with a weak positive, well I still have to take antiboitics? Just curious.

I have an appt. next Tuesday with the disease doctor, so i will keep you updated..

Thank you for all your help....

[J.M. Keyes, MD]

sorry to hear about your frustrations.  I would also ask about biopsing those nodes, even though your blood work is normal.

hope you are feeling better soon,
JMK MD

[Totie]

I have been tested for HIV, when I was tested for TB & EBV, negative. No I am not trying to lose weight. I have a complex on how I look. I don't like the way I look. I do not excercise in any shape way or form. I have been investigated for anorexia, trust me, all my family members and friends have been questioned. I have even had my throat checked for purging. I feel like an over weight person being told to quit eating, except they tell me to eat.

I guess since the night sweats are not normal, nor the weight loss as you say, i will keep the appointment. I don't think about any kind of cancer because all blood work comes back okay. My last TSH level was 5.90 so not over medicated.

Honestly I did think night sweats were normal, but now I am guessing they are not.

Thanks for reply...

[J.M. Keyes, MD]

Hi there,
It sounds like you are having a lot of issues for someone so young (38 is still young:)... night sweats and that kind of weight loss are not normal, assuming you are not trying to lose the weight.  I would see the ID specialist to follow up on the positive TB, and I would also consider HIV testing.  Any time someone has night sweats and significant weight loss, I am always concerned about the possibility of a malignancy, so I would ask about whether biopsing those lymp nodes would be beneficial.  I don't want to alarm you by saying these things, but I do think that these are important things to get ruled out.  So, yes, I would go through with the referral, and if nothing comes of it, I would ask your PCP about biopsing your nodes, and other investigation depending on what symptoms are unresolving.

Best of luck.
JMK MD