Eye Exams

A health update for you. My new neurologist, the wonderful Dr Lueck, is quite sure that I have neuro-sarcoidosis. This will always be a 'best guess' diagnosis, as the only way to be 100% sure is to get a tissue biopsy, and a brain biopsy isn't something anyone wants to do, or will do.

It turns out that my lumbar puncture tests results were abnormal - how the f--k all the doctors missed this when I was in hospital, I'll never know! Gah!

I did have oligoclonal bands and elevated white blood cell counts, and combined with the abnormal MRI and the location of the lesions (optic chiasm), it all adds up to a completely typical presentation for neurosarcoid. There you go, I'm normal at last! Ha!

Yesterday I had my latest peripheral visual field exam, and there was a little bit more improvement. Not a lot, but a bit. This is what has been squeezed out from another month on insanely high doses of prednisolone (40 mg/day).

Just so you can see what corticosteroids can do for you, if you have neurological vision loss, check out these results :

These are my test results from September. The black bits are where I can't see. Dark grey areas show partial vision. The circle represents my entire field of peripheral vision. The test is done by staring at a central light, and pressing a beeper every time you notice a light - these lights are pin points at different brightness levels (often very faint!) that flicker on and off.

I then had a month on 60 mg of prednisolone, and another month on 50 mg. These are the rather startlingly wonderful results from the end of October. This is what corticosteroids are bloody good at! At this point they let me drive again :)

And these are my test results from yesterday. The red circles show the optic nerve - we've all got blind spots there! So there has definitely been a little more improvement after another month on 40 mg of pred, but that central bit is pretty stubborn, isn't it?

The blank spots are still obvious and somewhat annoying all the time, I often miss bits when reading instructions and recipes, in particular. This may be permanent scarring, and I may just have to get used to it. My vision has also become generally extremely blurry since September, which is probably neurological in cause (not a drug side effect), so I'm getting my glasses prescription updated this week.

I'll see what Dr Lueck wants to do, whether I need to stay on such high doses or not. I'm seeing my immunologist Dr Cook next week, and suspect that I'll be put onto the immuno-suppressant meds, like Azathioprine and Cyclophosphamide (a chemotherapy agent). They are also "steroid sparing" meds, which means if you take them at the same time as prednisolone, you can get the same effect at a lower dose of steroids. These are generally very long-term meds for neurosarcoid patients. I just have to hope Dr Cook agrees with Dr Lueck about the neurosarcoid diagnosis, there's still some discussion going, I suspect ... still hoping to avoid the cerebral angiogram.

It turns out that the awful itchy blistering skin lesions I've had on my calves for the past couple of summers are probably sarcoid in origin too - I've been to a dermatologist, and when they recur (unlikely while I'm on steroids) I'll have them biopsied. This could provide us with the 'gold standard' tissue diagnosis for a definitive sarcoidosis diagnosis, so is the only time when I'm kinda hoping the horrible lesions come back!

One benefit of having such a rare disease (less than 4 per 100,000 people have it) is that you get the best doctors - both my specialists are the heads of their departments. I'm officially interesting.

I'm also on Lyrica now to deal with the numbness in my right arm and face, and the neuropathic foot pain. Getting used to it was dreadful, but after 10 days (during which I felt like a zombie and came *this* close to quitting) my body decided to just get on with things ... it does help a bit, but doesn't stop these symptoms entirely. The foot pain is more like 2-5 out of 10, instead of 7-9, though, so that's a definite benefit.

I really hope I can drop down on the prednisolone soon, the side effects are getting more difficult to accept, especially the Cushingoid weight gain / redistribution :( Feeling a bit like hiding away in a cave at the moment. I'm doing what I can to be as healthy as possible - eating well, cutting out sugar, exercising daily - but there's only so much you can achieve against such high steroid doses. It's all rather hideously inevitable. So if I look like a bloated frog next time you see me, be kind ...