Thanks Carole, and Karen.
To answer your questions: I have been pushing for many years now to find an answer to these symptoms. My previous history of arteriovenous malformation (AVM) in the brain (see profile) and have asked for the scans to determine if it could also now be a spinal AVM.
My GP ‘listens’ and then states “wait till you go back to see neuro”. I know his hands are tied, and he always states that he doesn’t want to question them because they know their job - so i’m kind of out there fighting for my own answers, and feeling like some hypocondriac in the process!
I was told the loss of sensation in feet/ toes etc is NOT AVM in my brain related…so what is it I have asked - their response “I don’t know”. I have been batted about from one neuro to another, and this next guy I see will probably get the brunt of the lot, and I am not leaving until I feel ‘heard’. I am going to ask for steroid injections, because I can’t do a thing with my spine problems, for example, I sat on a different chair yesterday, and in the night my back went in tio spasm again, leaving me waking up like I have done ten rounds with Tyson, and drank a litre of vodka (I don’t drink lol).
Rizzo - a friend of mine had very similar symptoms of being laid up for weeks, and it was MS. One time you would see her walking (sometimes) running to catch the kids from school, then the next week she would be using a stick and walking a snails pace in agony (that’s like me).
My symptoms do vary, and it is impossible to list them all (i’d be here all day) but they have been with me for many years, and i’ve been told not AVM related. Oh, I had a stroke and brain bleed back in 2005 - that’s how they discovered the AVM in my brain. I was told for years that it was a form of migraine, and to go and live my life. So again back then I felt like something wasn’t right and quite clearly there wasn’t. If they had listened to me and done a simple mRI they would have discovered it sooner, but it took a grand mal seizure behind the wheel of my car to get a scan, and because of it I am left with epilepsy.
My daughter is in her 3rd year at medical school, and currently doing neurology, so she has been a greatsupport for me, and I also know a fare bit about neuro because of all the ‘stuff’ I have been through.
I can’t wait for my appt in May. I am going to take someone with me, either that or I will ask his permission iof I can record the consultation. Either way I will know if it is spinal AVM or not, and if not then we need to move to the next step for ward for me.
Thanks for your replies, and for taking the time to read my dribble…