Had a good report from the neurologist. He said it was the best he had seen my fingers and thinks the Rituximab is working (slowly). I’m to see him in a month’s time - perhaps for a top up.
Thanks for all your nice replies to my post with the Harbour Bridge. This is the view from the next level (where they have their High Teas). To the far right isCircular Quay are the wharves where the ferries leave from. It looks a long way but is actually a few hundred yards. There is a lot to do without expending too much energy. Or if you are like me this time just sitting in the Hotel soaking it all up (yes Xandi the food was lovely).
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Looks lovely Lesley feeling like I wish I could joib you there too. What great news from your neurologist about your fingers, are you feeling better everywhere else with the Rituximab? Good they are keeping a close eye on your health.
Actually I don’t feel all that great, my brain is clear but my body isn’t responding too well. This morning I went down to the shopping mall to pick up some medications, had a coffee and picked up one other item. That has totally wiped me out for the rest of the day. If I take into account that my fingers aren’t breaking out in painful ulcers, maybe it is one big leap forward. Years ago I went through a time where I was suffering from pretty severe migraines, in the end they were reduced to a few times a month and the specialist told me to be grateful for that and not to expect a total cure. Maybe that is what is going to happen here. Hope that bit of rambling makes sense. Lesley
Its good to get your experiences out there Lesley, your bodies outbursts in these odd places is I believe helpful to us all given many of us have never experienced lots of the things you have and none of us know what is around the next corner. For many the discovery of BD comes after decades of illnesses and others are diagnosed in the first 20-30 years of life, for me my conditions have got worse with age whereas I read others have greatly improved. For you your treatments have been many and varied and now you having Rituximab is dishing out another set of symptoms and feelings. I really hope you can get some all round relief with the Rituximab top up and it provides you with greater relief in the very near future.
Thank you so much for the encouragement Gillian. The doctors were hoping mine would burn out but it hasn’t so far. It is such a weird disease though - what one person goes through someone else may never experience. As you say if we all pool our knowledge it can only help.
Sorry, the first picture was Sydney Harbour Bridge but from an angle not often seen, and the latest is of Circular Quay where all the ferries leave from. I have a habit of assuming that people are on the same wavelength as me or know what I’m thinking, lol.
I started off seeing a combination of a dermatologist, immunologist and a neurologist. Mainly due to logistics it has been whittled down to the neurologist (who has been extremely helpful). I also occasionally see an ophthalmologist and have my GP much closer to home. I’ve always heard you end up with quite a team. The problem is if they are not in total agreement ☹️
Great picture Lesley and really good to hear that your fingers are slowly improving , even if the other symptoms are still taking their toll.
One step at a time, every improvement is a win.
The last thing to go will probably be the fatigue and exhaustion, until we have a regular medication programme that works we are all running on empty. It will take longer for that tank to fill again. But you will get there in the end.
I just wrote a post on how disease makes me feel , you might find it amusing and I would love to hear your view ,
Speak soon and enjoy your time away, even if that just involves drinking in the view
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