I have been diagnosed by an ms specialist with lupus cerebritis. The one and only appointment with this doctor lasted 20 minutes. His diagnosed that as he saw I had edema in the ankles, had lesions on the brain - not characteristic of ms and a positive anti-dna. My ana is negative.
I followed up with a rhumy who said this was definately not sle lupus - only 2 of 11 criteria met, moderate positive anti dna and moderate positive anti-cardio lupins
a second neurologist who saw me three times, 45 minutes each time, shook his head and said this wasn't lupus, but possibly a demyelnating process
after seeing all three specialists I sat down and put together all the symptoms and tried to think of all other possible factors, where I travelled etc.
The key is that I have not shared these symptoms and my history with the above doctors as I didn't connect the dots that they might be related.
I have had two tick bites in the past, one leaving a rash that I didn't follow through, the other tick I burned out and have symptoms that come and go sometimes hourly/daily. I have also visited the eastern us, hudson valley, eastern and western connecticut and massachusetts.
Saw a lymes doctor last week that diagnosed me with lymes. Lymes is a clinical diagnosis.
I realize I need to share this history and symptoms with the first neurologist, he doesn't know about them. I am not sure he would accept another opinion, he seemed quite adament that I have cns lupus.
Lymes also can leave lesions on the brain, has very similar symptoms and is often misdiagnosed as lupus.
Confused as to which treatment route to take. Both are infamatory conditions, there is no reliable blood test for lymes and if I have lymes my understanding is that this may cause an incorrect reading with anti dna, and anti cardio lupins.
Lupus is treated with steroids that surpress the auto immune system. If this is correct then a lupus treatment would be lethal if I had lymes. Lymes is a bacteria.
I loved what someone wrote that "my primary responsibility is to yourself not to a doctor who may or may
not be fully equipped to know what is really going on with your body."
could someone answer these three questions?
1. Can lupus be activated by a trauma such as a car accident? Apparently dormant lyme can?
2. As a person with lupus do you get a head pressure that feels like someone is crushing your head like an aluminum can?
3. As a lupus patient, do your symptoms change frequently? I can truthfully say if I don't like how I am feeling, to wait a few hours, it will change. One day my ankles will swell, the next day they will be normal.