Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine you and obtain a history, I can not comment on whether or not you have BACNS or what the prognosis is, however I will try to provide you with information in general about this condition.
BACNS, or benign angiitis of the central nervous system, is one type of primary angitis of the CNS (PACNS). There are a few types of PACNS, including GACNS (a pathologic diagnosis made by biopsy), and BACNS, a diagnosis which is made by angiography (a procedure whereby dye is injected into the blood vessels of the brain and they are visualized). A diagnosis really can not be made unless certain angiographic findings are demonstrated
It has been proposed that BACNS represents a form of reversible vasoconstriction or spasm (spasm of the muscles in the blood vessels of the brain, leading to their narrowing) rather than true arteritis (inflammation of the artery). On angiogram, the blood vessels are seen to be narrowed and in spasm. The reversibility is in the symptoms and the blood vessel changes: the symptoms of headache and so on resolve, and the blood vessels return to normal. An angiogram is necessary to make the diagnosis, but additional testing that could be used in follow-up include a CT angiogram and a transcranial doppler (TCD) which is less invasive.
The differential diagnosis of BACNS, the diagnosis that could be mistaken for this condition, include reversible vasospasm due to medications (such as pseudoephedrine often used in cold medications, vasospasm related to pregnancy, exercise, cocaine use etc). Also, secondary types of angiitis such as lupus, infections, and several others. The differentiation between all the types of angiitis can be made based on blood tests and imaging in most cases, but sometimes brain biopsy is required.
There are no good research trials looking into the optimal ttreatment of BACNS, but verapamil is often used and seems to be effective, often in combination with a corticosteroid such as prednisone. A follow-up angiogram (or sometimes only a TCD) is necessary to confirm response even if the patient no longer has symptoms. If no improvement is seen, the diagnosis should come into question.
The majority of patients with BACNS do well with resolution of angiographic and clinical findings. However, a minority will have relapses. Other types of PACNS may not fare as well, with strokes and accumulating neurologic deficits in some cases.
It is important to discuss any new neurologic symptoms with your doctor, and be watchful for any signs of stroke (such as sudden weakness on one side of the body or the other, loss of sensation, room-spinning dizziness with double vision and difficulty talking, loss of language function, etc.).
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
Have you tried the xasculitis foundation website? They have support groups all over the country, and the contact person for the group nearest you may have a revommendation. I so hope that one of the vasculitis experts answers you. This is info that I've been trying to get for a long time. I have a similar condition, PACNS, and there seems to be very little specific info out there. I've posted on the member website, but I apparently never attempt to post on the expert site early enough to get my question on Good luck. From what I've read, the prognosis for BACNS is pretty good for complete remission without residual deficit, but I'm no expert..