Frustrated ~ What is wrong with me?

[gnite]

I need help and I don't know where to turn. I have been ill for the last two months with a moderate fever, night sweats, taken two rounds of antibiotics to rid infection - pain goes away but fever does not, weakness, fatigue, pretty much a constant dull headache, neck pain and occassional swelling that makes my neck stiff, pain in my upper left abdomen that is dull and achy and other times stabbing and even throbbing and bleeding gums when I brush my teeth. Was having chest pains and infection was suspected - but antibiotics must have cleared it?

I have had chest xrays, echo cardiogram, EKG, CT of sinuses, CT of abdomen, three CBC test, bleed time test, enzyme blood tests, and a Von Willebrand test. I have seen a general practitioner, cardiologist and most recently an oncologist/hematologist. The gp doesn't know what to do with me and has actually retired and won't becoming back after the New Year - he just said that my illness is legitimate and he doesn't know what to do for me. At least he is honest. He sent me to the cardiologist. The cardiologist and the gp talked and thought maybe I had leukemia so they sent me to the oncologist/hematologist who said that I don't have leukemia after looking over my chart and tapping me in the back four times. He ordered a Von Willebrand blood test to be sent to the Mayo Clinic - but that was all he tested for. I am 31 years old, four pregnancies - 3 of them delivered alive and 4 surgeries with no bleeding complications.

My fevers range from 99.8 - 102.9 I have fever blisters on my lips and occassional heat rash. I take Tylenol when it gets above 101 - but I don't want to take too much Tylenol - if that is possible.

I'm told that I don't have mono (2 negative tests), I don't have lyme disease, I don't have CFS, I don't have leukemia. I don't have depression.... etc... I've been sick for 2 months!! What is wrong with me? I am normally healthy and active.

[gnite]

I called a doctor at home the Friday night who is a friend of mine. I felt bad exploiting that relationship in this manner - but I knew I needed help. She saw me yesterday morning and did a CT of my head and 2 blood cultures taken at two different times. She wants me to go back tomorrow for a spinal tap, MRI, and 3 days inpatient. She thinks that I have menegitis or some kind of infection in my spinal fluid. She said that she will consult an infectious disease specialist as well. I feel so much more confident with this route.
Thank you so much for your replies! I really do appreciate your time. I still have an appointment with the oncologist on Wednesday - I will ask about the Naproxen test.

[DennisMD]

Hi.
I suggest you see also an infectious diseases specialist since most of the time, the cause of prolonged fever in adults is infection.  However bear in mind that as the duration of fever increases (>6 months), the likelihood that the cause of fever is infection decreases.  
You can ask your hematologist/oncologist to rule out malignancy (leukemia, lymphoma, or carcinoma) as the cause of your fever.  There are several tests that can be done.  The easiest would be a Naproxen test to rule out malignancy as the cause of fever..  
All laboratory work-ups can be done either as an out-patient or in-patient.  Choose whatever is the most convenient for you.  
Please feel free to give updates.
Good luck.

[hava]

Many symptoms, but all tests seem OK. Now you need to help the body to take care of some of the symptoms.Do the following exercise everyday and once you start doing it for 30 minutes twice a day, you will notice benefits after a week.Then come back and report here and I will suggest some more techniques.It will help you very much.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day(maximum 60 minutes in one day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

[gnite]

My fever has been constant for at least 2 months with variation of temprature frequently above 101 F.
At night my fever rises above that and I have night sweats. Fever reduction medication does take the edge off but rarely gets below 99 F. I don't take fever reducers often because I am concerned about possible side effects if any. When I do I take Tylenol.

I have not been admitted as an impatient for investigation. All of my tests have been done as an outpatient and usually done one at a time while waiting a week or two in between for results before administering another test.

The hemo/onco wants me to come in next Wed. for a platlet count to be sent to another hospital.

I am to see an internal medicine doctor tomorrow if he can squeeze me in - he is over booked as it is. He said that if he can't get me in to go to the emergency room but that I can't request him until he actually sees me through an office appointment first so that I am considered his patient.

My fevers have been severe enough at times that they have caused confusion and inability to use or find the proper words. For example I told my mom that I have a fishache instead of a headache - but I meant to say headache. This has happened once but it really concerns me.

All of my blood tests have back within normal limits - my CBC's have come back within the lower normal range. The Von Willebrand test came normal.

What questions should I be asking of the specialists that I see?  What specialists should I ask to see? Should I demand to be admitted as an inpatient for observation or investigation? Why if the doctors are concerned as they say haven't been more aggressive in their approach? I really respect all of the doctors I've seen but I just wonder if there is more I should be doing to be proactive patient.

Thank you for your time - I know that my questions may seem difficult to answer without seeing me.

[DennisMD]

Hi.
How do you characterize your fever pattern?
What are the results of your blood tests, other examinations?
Were blood cultures done?
Fever of unknown origin is defined as temperature of more than 101 F on several occasions, duration of fever of more than 3 weeks, and failure to reach a diagnosis despite 1 week of inpatient investigation.  This is a diagnosis of exclusion.  Examples of diseases that can cause prolonged fever in adults include infections (like tuberculosis), malignancy (like lymphomas, leukemias, carcinomas), inflammatory diseases, and drug fever.  Most of the time, despite thorough investigation, the cause of the fever is not elucidated.  
I do agree with consult to several specialists in order to find out what is really causing what you are experiencing now.  You and your doctors need to be patient in the process of determining the etiology of your problems.
Hope that helped.
Good luck.