Vasculitis?

[jeanee]

I am a 57 year old female who was diagnosed with CNS vasculitis last February after three episodes of crushing headaches. An angiogram showed severe inflammation of the blood vessels in my head. I was put on prednisone and cytoxyn. My doctor is closely monitoring my CRP and SED rate for any indication of inflammation. Both were back to normal by May. At the end of September I began experiencing neckpain on the sides and back of my neck and ear and throat pain that I thought were  infections. The doctor gave me a blood test and prescribed antibiotics. The next day when the bloodtest came back I was immediately admitted to the hospital with a very low white blood cell (WBC) count of .8 and treated in the hospital for three days until the WBC was back to normal. The neck pain and ear/headaches have never gone away and have become severe. Since I was released from the hospital I have had an MRI, CT scan and blood tests. The MRI and scan were normal. The bloodtests have returned to normal after a CRP of 132 that accompanied the .8 white blood cell count. My doctors (rheumatologist, neurologist, ear and throat, and family doctor) cannot give me a reason for the pain or any relief for it. They are guessing it is nerve related and the treatment is not helping. My symptoms are a severe stabbing pain that centers in or around my right ear but does seem to migrate, on occasion, toward my right jaw and temple. The curious part of my problem is that the pain is dull during the day and I am usually able to function (when the medications are not making me nauseous), but in the evening about 7pm, like clockwork, I experience stabbing debilitating pain that will last well into the night or morning. The doctors do not believe it is vasculitis because of the bloodwork, but I am not so sure. Any ideas? I am desperate for pain relief and sleep and peice of mind.

Thanks,  Jeanee

[Kevin Pho, MD]

You have had a pretty comprehensive evaluation for CNS vasculitis, including several specialist consults and tests.  If the conventional tests - such as angiogram, MRI and CT scans - are not revealing, there is some early data that SPECT or PET scanning may be helpful.  

Another consideration would be a biospy of the affected vessel to ensure a correct diagnosis.  Treatment with high-dose steroids and Cytoxan are traditionally used for these cases - as you mentioned.  There is also limited data about the use of calcium channel blockers.

You may want to inquire about another opinion to ensure the diagnosis is correct.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[missy_g]

I'm a 37 year female with lupus.I just found out i have blockage in my right leg 50 percentin to places.do you'll i think need surgery.Don't smoke chl is 189 blood pressure is good.I don't what to think.