I was just sat writing down everything I can think of that may be related in preparation for my first neuro appointment on Monday. Something just struck me. I had an 12 month period where I kept falling over. When I say ‘kept’ it wasn’t that frequent probably once every 6-8 weeks or so. It used to happen if I met any uneven ground. What would normally cause a slight wobble would have my ankle (either ankle) turning and I’d be on the ground before I knew what was happening. From what I’ve read most ms related falls happen because of weakness or vertigo type problems. I haven’t fallen in about 3 years now, thank goodness but I was just wondering if anyone else has experienced this or what has been the cause/frequency of your falls?
Hi Betty, falling is a big common problem for most MSers. It is most often caused by foot drop.
This means although your brain (without actually thinking about it) sends a message to your foot to lift to take a step…the foot hasnt received that message, due to myelin damage, and it trips you up, causing a stumble or a fall.
I used to have so many falls…I fell over fresh air! Falls can also be caused by too high a dose of muscle relaxants.
I was thought to have PPMS, before my diagnosis changed to hereditary spastic paraplegia.
I have been a full time wheelchair user for several years now.
That makes me more sure it’s not related cos wasn’t anything like that. I’ll mention it anyway. This poor bloke is gonna think he’s got a right loopy hypochondriac lol!
Don’t forget that everyone with MS is different. Mention everything to the neurologist because it might be connected. Then again, you may not have MS, so it could be that your falls related to something different.
I had falls now and then before diagnosis. The one I remember most clearly was about 2-3 years before I was diagnosed, in retrospect I now think I’d been having a mild relapse (I remember a glass sliding straight through my fingers in a bar at the same time), I was walking along a road, and suddenly had one hell of a fall, I don’t know if my legs just gave way or I tripped over a small imperfection in the pavement or what. I ended up with blood all over my hands and a bloody knee. An almost identical one happened several years after diagnosis that I knew to blame entirely on MS but the first one I put down to clumsiness.
Later I did have foot drop, but my initial falls were me falling over my feet, maybe not seeing things properly, perhaps I had to learn to look where I was going, maybe the feeling in my feet was a bit ‘wrong’ so I could fall because I couldn’t rely on what messages my brain was getting from my feet.
Whatever the cause, if there’s possibly been a neurological problem in the past, mention it. And the neuro is used to seeing people with a whole list of things that may or may not have any bearing on you now. It’s an excellent idea to write yourself a reminder of everything to tell the neurologist. Don’t worry about it being too long, don’t worry about getting your list out. Just make sure you get out of your appointment what you need.
Hey Betty, I had a spell a coupla years back when I kept falling down the stairs. (The wife was no where to be seen, before you ask.) The last time I went I was carrying my toddler, so I took the steps instead of crushing him. (He was fine) It seems common, but still sucks
6 months is a dreadful wait. How dreadful for you to be waiting this long. I really hope you don’t wait too long for any neurological tests.
Flipping postcode lottery. In general I think the NHS is a wonderful thing, but it’s unconscionable to have such variations in different regions of the country.
For sure, mention abnormal pattern of falling over. Your neurologist is the one whose job it is to join the dots, and a full picture of what has been going on will always help.
I think I was supposed to come away reassured but to be honest I don’t know how I feel… Neurological exam was normal and she took most of my history but I kinda felt she had heard it all before and had a big list to get through.
She said that because all of my symptoms were peripheral (sensory I’m guessing?) and because of my age (47) it would be hard to decipher a brain MRI, and because I have no CNS symptoms there’s no point in an MRI of the spine. She also said that if it were MS (which she thinks unlikely) that she wouldn’t be looking at any treatment because I’m well. Which I can understand.
So I think the general gist was to forget about it .
I guess if it is MS something will happen at some point…
It seems to be the general attitude of neuro as I have the same feeling from my appointments. I come out thinking, well if its really serious something will definitely happen, but couple days later and I’m feeling crap that nothing is being done to sort this out. My symptoms are mainly sensory as well, my brain mri is normal and neuro quick exam all good too, the debilitating part at the moment is the fatigue and weakness in certain muscles. The first line when she came in at my last appointment was “you know I might not be able to find an answer for what’s going on”, like the great positive attitude there!
At least I’m booked in for different tests this time and I’m hoping so bad something will show there because as far as my limited knowledge can make out, these tests, if positive would steer me away from MS.