Hi all, still suffering with Symptoms 6 weeks on, the sensation up my bum has subsided and the pins and needles have to. I have an Spinal MRI on the 26th. One of my more annoying issues is one of my knees has a tight band sensation (Well both knees do, and waist and both feet) and it keeps buckling and seems to be getting more frequent, it catches me off guard. If this is a symptom has anyone got any advice to help me? I’m currently on my second day of Gabapetine. Thanks in advance.
I don’t get the tight band but my right knee buckles quite often. Still awaiting the results of mri though so in my case may well not be Ms!
Hi Cc, thanks for the reply. So we’re both in limbo land then, how long have you waiting on your results? What symptoms have you got?
Only a couple of weeks and I get them this week, I’m pretty lucky in that sense. I was initially referred to the neuro with cognitive stuff, the most notable of which was getting off my coach and not knowing where I was (turned out I was at the end of my road…!). Lots of general brain fog and doing stupid stuff, hobs on, doors unlocked, not being able to find the right word etc. But whilst I was waiting a few long term physical niggles were bugging me and it suddenly hit me that pretty much all the things that bother me physically could all come under the neurological umbrella, so very frequent pins and needles in my right arm and leg where the sensation never seems to fully come back, numb fingers, numb patches on my thighs, reduced sensation in my feet, restless leg, horrible creepy crawly feelings under my skin, weird sensations that my leg or foot is hot or wet, occasionally a buzzy feeling in my foot, poor balance, failed the balance tests spectacularly, sudden prickly sensations that make my legs jolt, tight calves that then turned into a tight achy band around my feet since May, muscle twitch in my thigh that stays for a few days at a time when it comes, urine retention and faecal incontinence, plus the buckling leg. But she only did a brain mri despite the more physical symptoms and I’m worried that if there were anything she may not see it, I feel like she’s been sidetracked by the fact that my doctor initially referred me worried about early onset dementia. So I’m hoping if the brain mri is clear she still does a spine one just to rule out anything else. I can write off a lot of it as stress or whatever but there are some things which are so long running that I feel sure they can’t be stress related! How about you?
Hi, that is an overwhelming amount of symptoms you have, absolute credit to yourself for dealing with them. I do hope you get the answers you’re looking for and with the greatest of intention that you only have stress. My symtoms are/were Burning/ice cold feet and parts of one leg - now subsided Pins and needs in feet - now subsided Tight bands around feet - on going Tight bands around knees - on going Tight band around waist - on going Numbness from waist below - improving in some areas Sensation between bottom - 80% subsiding Hard feet sensation as if I was walking on stones - 80% subsided Knee buckling - sporadic
Knee buckling was a big issue for me at the onset of my first symptoms, to the point that it would happen repeatedly in left leg as I walked along, every thirty seconds or so. Used a stick for a while. Nowadays it still happens but very occasional and less destabilising as I dont drop so low before correcting; happens typically when I am walking slowly around a supermarket pushing a trolley for some reason. SSEP test established there was a significant (abnormal) reduction in nerve conduction speed for that leg but nothing on my mri s except lesion on optic nerve.
Thats interesting you say about the supermarket thing, because when the wife and I go food shopping (years of it) my knee would buckle ever so slightly once or twice when we were there, and as you said at a slower pace. I haven’t been diagnosed yet, but I can only wonder if it was a small sign. It just happens more frequently at the moment, and i just wonder if it’s because of the really tight band sensation around my knee.
I 've never had the tight band sensation and neither have I been diagnosed but its interesting that you experienced the same association with supermarket shopping.
Yeh, it’s when walking slowly my leg hates it. Quite annoying because i’m becoming self concious of it because it feels more noticeable then it probably is. Have you have no diagnosis then?
No diagnosis. Abnormal SSEP; abnormal VEP; lesion on optic nerve was discovered shortly after I had been assessed by neurologist so he did not have that information; LP showed no banding.