I’m no doctor, but recent developments have shown I almost certainly have PANDAS or PANS.
A standard way to see if symptoms are autoimmune-related is to do a steroid burst for five days. The theory is that if inflammation is the culprit, the symptoms will improve with the steroids. It doesn’t work for some true PANDAS/PANS patients if there is still an active infection like Lyme or mycoplasma causing an exacerbation.
But it worked for me. I just finished a five-day burst of Prednisone with incredible results. By the third day, I did not need any Nuvigil to stay awake, and my concentration was so good that I was able to sit down and write a paper and take a test in a timely fashion with no brain fog. My tics and walking problems also significantly lessened, though didn’t completely go away. My depression vanished. It was amazing to feel normal again!
Dare I hope that I’m not actually narcoleptic? I don’t think people with narcolepsy can suddenly stop feeling sleepy during the day. Narcolepsy is an autoimmune condition caused by the destruction of a brain chemical called hypocretin. Once the chemical is destroyed, it can’t be regenerated. Hypocretin regulates wakefulness, so if the loss of it (narcolepsy) was what was causing my sleepiness, I should not suddenly feel this awake with no stimulants. I’ll see my sleep doctor next week, and he’s going to be shocked. I wonder what he’ll say about this…
The next step is treatment with an antibiotic called Augmentin. My doctor prescribed a high dose of it for thirty days, but I’m curious to see what the PANDAS specialists will say. In the next couple weeks, I’ll be seeing an immunologist and a neurologist that specialize in treating it. I should have seen them eight years ago, but how could we have known? I’m hoping and praying that I do not have permanent brain damage from unknowingly delaying treatment for so long. But these last five days of steroids give me hope that I will soon feel normal again….