17 September 2010

Mystery girl is home again!

I'm back home, after 11 days in the Stroke/Neurology Ward. So farewell to "bed arrest" and my noisy room mates! Miss Petal is very happy to have me home :)

I don't have a diagnosis. They just ran out of tests to do, and I ran out of patience. My vision hasn't got better - wel, I think my right eye is a bit better, but my left eye is worse. I also developed paresthesia in my right arm while I was there, which I still have. Feels slightly numb, with a light touch of pins and needles. My neurologists say this is probably from scarring (ie demyelination in my brain, with subsequent development of scar tissue). My right leg nerve reflexes were a bit slow, too. They think my vision should improve, but they don't know how long it will take, or whether I'll get all of it back.

I've got a fair list of symptoms to keep an eye out for - basically, any ability that disappears. Muscle weakness, and so on. They think that the 6th nerve palsy I had 5 years ago is probably related. I've also lost my senses of taste and smell about once a year, for a month or so, for the past 4 or 5 years. Something's not right. I'm to go straight to Casualty if anything changes suddenly. I'll have another MRI in about 6 months to check what's happening inside my head. The only way to find out more is to do a brain biopsy, which they don't intend to do (phew!).

MS has been definitively ruled out, for several reasons, which in some ways is a pity. Clearly there's demyelination happening in my brain, it shows up on my MRI scan. It would be so much easier to have a clear unequivocal diagnosis, with some clear treatment options. As it is, we know something's wrong, but there's no diagnosis and no treatment options. The other demyelinating diseases look more scary than MS.

Today I pottered around, caught up on housework and laundry - nice to be active again! I also called Vision Australia, and will be interviewed soon, so I can become a 'client'. I am also looking into getting a Vision Impaired bus pass for our local buses, so I can use concession tickets, as I'm not allowed to drive. Reading is still a major problem. I've got an appointment with the Vocational Occupational Therapist at hospital next week, hopefully they'll have some ideas! I'm also sussing out my Mac's Universal Access settings, and Safari's Reader, which could make using a read aloud function a bit easier online.

Thank you everyone for your lovely comments, emails, and visits ... you all helped me so much!


  1. I think Petal might be a bit small to be a guide dog :( And a real one would either tread on her or absent mindedly nibble on her. I didn't know there were other, non-MS demyelination things, good grief! Big hugs.

  2. Well it's a shame they can't work out what is wrong with you, but it must be nice to be home and in your own bed. Hope things improve for you sooner rather than later.

  3. Glad you are home. Hopefully someone will be able to give you some answers soon. Take care and good luck with getting a Bus Pass.

  4. I just hope knitting ability is not too affected. And I hope excited cuddles and licks from Miss Petal help in recovery.

  5. Glad you are home and feeling happier. It is a pain not to have a diagnosis, I am know Petal will be an excellent companion!!

  6. Not having a diagnosis is tough to handle. But here's a thought! Maybe you'll get written up in a medical journal! Photos of your brain could appear in medical books and students could ogle them for years to come. You'll be famous!

    But seriously, I'm glad you're home so you can rest. And I really like the idea of Petal as a guide dog. I can see it now, "OOOOhhh look mom! Over this way, over this way".

  7. Do your doctors get cranky when they can't put a finger on the problem? Mine do. Then they start acting like I'm a hypochondriac. Hard for them to accept that they don't know everything. Thank Goodness "House" isn't your doctor. He never gets the right answer until the screaming last possible minute.

    Sending you lots of hugs and positive energy!!

  8. Well, at least you are home - hopefully the doctors will come up with something and they just need the time to ponder the problem.

  9. Glad to know you're back home. Sorry the the doctors couldn't pinpoint what the problem was, but I hope you get well soon. I enjoy reading your blog here in the U.S. Sending good wishes/vibes your way....


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