Help! My Doctors Have No Clue!!!!

[cteschendorf]

Hi, I am hoping someone here can help me! I am a 32 year old female with multiple sclerosis and type 2 diabetes. I am currently keeping the diabetes under control with Amaryl and Metphormine. I also take Tramadol, Soma, and Atteral for the MS.
For about a year now I have had a high white blood cell count, it fluctuates between 50,000 and 80,000. My neurologist sent me to an oncologist who took about 40 tubes of blood from me and performed a bone marrow biopsy to test for leukemia. The results of these tests came back negative. From there we just kind of left it alone for awhile.
I started having bad headaches; I usually don’t get headaches and have a very low pain tolerance so there’s no telling how bad they really are. My doctor also found that I have an extra sinus and thought that maybe this was the cause of the headaches and possibly the high WBC. She suggested that I see an ear nose and throat specialist.
I went to see the specialist. This guy checks it out and says, there’s no way that this is the problem. So, with the way things have been going, I have now developed this red bump rash type thing on my arm. I thought they were hives because they are red and itch. I have tried Benadryl and a prescription type crème, which only relieve the itch but have no help in the healing. They are now starting to spread farther up my arm and are also on the back of my thigh. I noticed that one when I shaved over it! OUCH!
Before I am broke and living in the street because of this guessing game, I was hoping that someone may have some knowledge of whatever that I am suffering from. My gut tells me that all these things are tied together, but the doctors are left scratching their heads. Please help!

[risnerrose]

My hubby (a veterinarian :) wonders if you've ever been placed on doxycycline?  He also wonders if you live in an area plagued with several tick diseases, such as ehrlichia (caused by rickettsial bacteria). Any joint pain and or swelling?

[Quixotic1]

Well, I am out of my league with this one, but I'll throw a couple things out there.

What you are having with the incredibly high white counts is often called a leukemoid reaction where the baone marrow pumps out huge numbers of white cells, both ones that are mature and ready to be relaeased and also immature ones.  

Leukemia is always the first thought here and that is why you saw an oncologist and had the bone marrow test.

Bacterial infections rarely reach white cell numbers this high, so I wouldn't consider a sinusitis either.  Having an extra one or missing one (me) is not unusual.

In my experience I only came across leukemoid reactions a couple times.  They can be seen in infections with more unusual things like tuberculosis.  In fact, TB is usually my first thought.  With the chronic headaches I would want to rule out a TM meningitis.

I have also heard of leukemoid reactions occurring in spirochetal infections like leptospirosis, a Clostridia difficile infection in the intestine.  Some case reports implicate the Epstein Barr Virus as a possible offender in the leukemoid reaction.

I just read about a cutaneous (skin) form of the reaction with a hypersensitivity to a drug.  The drug in question was phenobarbital, but can occur with just about any drug.  The diagnosis in this case was made from a skin biopsy.  I have found them reported in several other anticonvulsants.  Other drugs with leukemoid reactions associated with them are:

Acetaminophen
antihistamines
hydrocodone (Vicodin)
antibiotics (penicillins, sulfa, minocycline)

Then several other forms of cancer can also be associated - solid cancers as opposed to blood cancers.  Again, the oncologist would/should have considered this.

Then there is the genetic (I believe) WBC anomaly that causes sky high white cells called Pelger Hewitt cells.  But, the lab usually picks this up.  A good hematologist should pick it up also and oncologists are also trained as hematologists.

When ruled out a form of leukemia (there are several) the oncologists usually tests for the Philadelphia chromosome that is highly associated with one form of leukemia - That was hopefully done.

So, my only advice would be : possible next steps would be 1) stool culture for Clostridia, 2) a referral to Infectious Disease to see if you have a weird infection, 3) biopsy of the rash, and 4) consideration to dropping your meds one at a time to see if this is a drug reaction.

I hope this helps, but again, it is not my area of expertise.

Quix