I cannot tolerate steroids at all. My consultant wants me to be on them daily. But even half a day makes me very low. I feel so ill when taking them. Last time I had them IV, I was ill for weeks. Why where you given them?

The neurologist put me on steriods because she said my spinal cord was inflamed-she said to think of your spinal cord as a tree on fire. Designer16

Just seen your other post. You really need to get under the care of a doctor who is a specialist with APS. Where are you living?

I live in palo alto, California-USA. I have been very unlucky to find someone-they all say the know APS but my latest blood test have been neg. it is like they don't believe in professor Hughes.

I'm not sure that its not believing in Prof Hughes per se its more seronegative APS that everyone is having a problem with and that comes from the diagnostic criteria. Because of that Doctors will not diagnose patients until they have positive bloods especially in USA because they could get sued if something happened and someone questioned why they treated a patient that did not fit the diagnostic criteria. Therein lies our problem even though it also says that medical history should be taken into consideration. Some Doctors just don't want to take the chance and would rather pass the buck onto somebody else. My advice find that somebody else willing to treat seronegative APS.

Hon, can you copy this last post as a new question (so everyone will see it) reference it to your original post. I hope that someone on the forum will know of a good specialist near you. Can't believe you are going through such a hard time. Sadly it happens to a lot of us. So we understand your frustrations. There is also an association www.americanaps.org who might know of a specialist close to you.

I think APsnotFab put it as clearly as a photo.

Inasmuch as finding a specialist in the States, there are many university hospitals around you. I would call the American Medical Association and ask them for a referral specifically to an APS specialist in your area. The university hospitals in this area (Chicago) have their own medical specialist referral departments, usually attached to what is called the Professional Staff office. They take care of the credentialling of the doctors as well as running them through and entering them in the National Practitioner Data Bank which reveals to the public any law suits won against a physician - in exchange for the sum of $6.00. All physicians that want to practice in the States are entered and checked through this so that bad doctors cannot hop from country to country or state to state. Try your university hospital doctors' referral service. If they don't have that department - operators can be very resourceful people. Ask the operator how you could find a specialist in that hospital. As a last resort - call the Office of the President as ask how one would be referred to a specialist in their system.
When I think of it. I bet you could pull most of that up on google. You just need to know your closest teaching hospital's name. I concur with Jane-Martin in referring you to the American APS Organization. Many, many resources to find resources.
Warm wishes and good luck.
Canary