I’ve not been around for a while and thought I’d pop in to see how people are and update you.
I saw my neuro consultant a couple of weeks ago. She confirmed my brain MRI was fine, no trapped never as expected. I asked if the scaring from the brain surgery could be causing my symptoms and she said it wasn’t big enough for that. I also told her about my continence problems which seemed to worry her (she said if I ws unable to go to the toilet or had repeated accidents to go to A&E.)
I am having an MRI of my spine on Sunday. Basically she said if there are lecions then we are going down the road towards an MS diagnosis and if this MRI is clear than we can only assume my newer symptoms are somehow related to my brain haemorrhage and I’ll be discharged. She did say she was moving away from the idea that this was linked to my haemorrhage though.
It is strange for me to get reduced sensation and all the other stuff as I was generally recovering steadily before. I am not sure what to think really. Surely surving a brain haem and then getting diagnosed with MS is a bit much?! It also feels odd that it seems like the results of this MRI will mean I am fine and just have to adapt or I have a neurological disease! Anyway, that is me then, still in limbo land. I hope everyone else is doing OK?
A spinal MRI is a good start, but I wouldn’t be happy about assuming it’s all down to your haemorrhage if there is no sign of MS - there are plenty of other conditions that cause neurological symptoms that do not show up on MRI after all.
Hopefully all will be revealed by the scan, but if not, you might want to think about a second opinion.
Whatever she says I suspect she will come up with another test somehow. She mentioned lumber punctures but she knows I will only consent to that if there is a very good reason.
My long term case manager told me neuros do not like not being able to diagnois things and always seem to have something else up their sleeves.
I think I’d rather it was MS than just getting a ‘we don’t know’ and being left to deal with pain, numbness, weakness, the odd collapsing on the spot and wetting myself I admit!
I just hope I get these results in less than the 12 weeks I had to chase the first lot for
Thanks for the update its always nice to know how things are going.
I would be asking the gp to refer you to the continence service,or if its like round here you can self refer and get some help with the continence issues. Many of these type of problems are easily rectified with their help.
It isnt embarrasing at all as they deal with it every day,and could give you one less thing to worry about.
Fingers crossed since they moved me on to vesicare and then doubled it I haven’t had any more episodes of totally losing control and its back to the drips and drabs if you’ll pardon the expression
It is good to know though. Tenna lady sent me a sample of their discret pants and I wanted to weep. I just can’t bring myself to buy a pack to have around just in case which is stupid because I didn’t bat an eye buying paper pants to wear during labour.
I am so grateful as ever to have this board to post such things. My closest friends now most of my situation but not all. I have now been told my sterilisation may have failed so am waiting to be called in for scans and probes shudder for that too. I dream of a time when hospital will not be such a large part of my life I really do! x
