I have just come back from my Psychiatrist; it was a really good appointment.
My doctors are just really concerned because in the last three months, I have just been "spiralling downward." They are starting to think that the meds may actually be doing more harm than good.
My Neurologist is concerned because of the C.N.S. involvement, especially because having seizures originating from three different lobes of your brain is apparently very rare and usually only occurs in conjunction with a serious case of Encephalitis. :shock:
My doctors think that the virus which I caught in Austria is permanently circulating in my blood and has resulted in wide-spread Viraemia, affecting all of my organs, including, most concerning of all, my brain. They also think that my highly allergic body has become allergic to the virus! :? :shock: They know that there is definitely an auto-immune disease going on here, but the virus doesn't seem to have left my body either! This is why they cannot put me on Immunosuppressive drugs; it's just too dangerous because the virus is still around and they're scared that the virus would kill me if we made my immune system any weaker than it already is. They know that I have Sjogren's Syndrome and some form of Lupus (they're still wondering whether it is turning systemic or has turned systemic and that they're just not finding it in the blood. Of course, five percent of Lupus patients have negative A.N.A. Tests anyway, so they can't really rule that out yet. For example, one of my mother's friends has Discoid Lupus, but her A.N.A. Test was negative. My stepmother's cousin was diagnosed with S.L.E., even though her A.N.A. Test was negative because she had Arthritis everywhere, Pericarditis, Pleurisy, Kidney Disease (she was on Dialysis), mouth and nose ulcers, a malar rash, fatigue, constant low-grade fever, loss of appetite, Alopecia, Raynaud's Phenomenon, Sjogren's Syndrome, Vasculitis, Antiphospholipid Syndrome and she was photosensitive! :shock and they're definitely considering Behcet's Syndrome.
They are considering possibly admitting me to Hospital for two weeks at some stage, where my Paediatrician/Paediatric Cardiologist, my Neurologist and my Psychiatrist will "look after" me. They want to try and taper me off my meds, gradually, to see if it will make a difference. We're not sure what we're going to do with the Anti-Epileptic Drugs yet; I'm seeing my Neurologist in two weeks to discuss all of this. I am seeing my Paediatrician/Paediatric Cardiologist in two weeks on the same day as well and I'm going to ask him if he knows of an Immunologist/Allergist or someone who does Immunotherapy because that would be brilliant for my allergies and I would then be able to stop taking my allergy meds (just the pills; I would still use my nasal spray), which would be wonderful, as anti-histamines are known to cause and worsen fatigue! However, they will still allow me to use my Inflammide Cortisone Inhaler, my Ventolin (Asthma pump), my eye drops (for the Sjogren's Syndrome), my nasal spray, my bulk-forming laxative (it's not a pill or anything, it's more like little seeds, which you swallow with water), my skin creams and my vitamins (High Potency Vitamin B Complex with Biotin and Folic Acid, Vitamin E, Magnesium, Zinc and Omega 3 Fatty Acids). They're hoping that the only pill that I will ever have to chronically take will be my Epilim and possibly, my Zelnorm (although they would preferably like to stop that too, but my colon is like a rock!)
My Paediatrician/Paediatric Cardiologist would like me to see a Nutritionist who will be able to help with the "detox" and with following a strict "diet"; they're hoping that she will be able to help me with all of my food allergies, as I am allergic to gluten (Celiac Disease), seafood (causes Anaphylaxis), fish (causes Anaphylaxis), peanuts (causes Anaphylaxis), onions (causes Anaphylaxis), garlic, yeast, tomatoes, avocado pears, egg whites and jam (don't ask! I have no idea why, but ever since I was five years old, jam has made me vomit like nothing you've ever seen before and I break out in a really weird rash on my face! :?) - yes, I'm being serious! :shock:
While I am in Hospital, if I need a Laparoscopy (to check for and repair, if there is any, Endometriosis) or an Endoscopy, etc. my Psychiatrist said that they will organise that then too.
Well, I feel a lot better now that I know that my Neurologist believes me, etc.! I'm so embarrassed though because I wrote a poem about my Epilepsy and my Psychiatrist read it and now he wants to send a copy to my Neurologist (who desperately wants to read it, apparently! ops and my Paediatrician/Paediatric Cardiologist, who is also very keen to read it! ops: ops: ops: ops: ops: