Hello
This is my first time writing on the forum and I will try not to be too long-winded. I am 61 years old.
When I was 23 I had optic neuritis in my left eye and totally lost my vision in that eye but with steroid treatment my vision recovered. I was aware that it could be the first symptom of MS but I have kept well since then, up until 4 years ago when I noticed that my lower body felt stiffer and my balance wasn’t as good. I put it down to having put on weight and being unfit.
Then 2 years ago I woke up one morning with tingling going down my right leg and an altered sensation in the sole of my right foot. I also had groin pain, hip, thigh, buttock pain and my lower back felt a little weak and I difficulty walking. My GP sent me to a neurologist who organised a lumbar MRI but it came back pretty much clear so the back specialist said it wasn’t my back causing the symptoms. I have also had a lot of physio but it has not helped the problem and I am now discharged from physio. I had a brain MRI which did not show lesions. I have said I am worried that it is MS and my neurologist said he didn’t think so and that I have health anxiety but he is going to send me for a cervical and thoracic scan but I am not a priority case so it will be a long wait.
I still have difficultly walking mostly on account of the altered sensation on the sole of my foot and especially on softer surfaces like floor in shops. I also go at the speed of a toddler. I have sore hip, thigh etc when walking but little pain when sitting and none when lying down. Although never a fit person I was a very quick walker and everyone is asking what on earth is going on with me. I can’t carry anything now like a shopping bag.
I was just wondering what you thought my next move should be. I am worried about it which I think is pretty normal.
Thank you for reading if you have made it this far.
Hi Annie
Do you use a walking aid, a cane/stick or such like? If not, that is the next move - get one. Without a cane/crutch I walk way slower and with tiny steps (they feel tiny compared to my usual stride anyway); with the walking aid, I walk almost normally and way quicker. The altered gait also played havoc with my knees/hips etc. I’ve also been seen by the Orthotics team at my local hospital who have provided specific insoles that help keep my feet/ankles/knees/hips in better alignment (everything was starting to drift inward causing all manner of pains), they have made a world of difference.
Hang in there with the MRIs etc., and continue to dig for an explanation - “It’s not x” is not good enough, if it isn’t x then what else might it be? and don’t take “I don’t know” as an answer either - if they don’t know, who else might?
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Just a small practical suggestion: might you consider using hiking poles for walking? I’ve had MS a long time and they’re a necessity for me, but you might find they help you to get around much faster. If you have numbness or balance issues or pain or loss of sensation, they can just give you a little more confidence. Honestly, with a bit of practice, it’s almost like being quadrupedal. Plus, it’s a bore to be shuffling around at a snail’s pace; going faster is good for morale and better exercise too.
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Hi Theresa
Thank you for your considered reply. I do have 2 sticks (one from NHS and a lighter one I bought in the chemist). I’ve not been using them much at all recently as I thought (goodness knows why) that it would be better for me to try to walk without them.
I had to go out today and took my stick with me and it did make a difference to my walking, especially my speed and I was less afraid of falling.
I saw my GP a few days ago and she says she now thinks the numbness in my foot is due to a one off sciatica attack two years ago, though at the time I was told it wasn’t sciatica and my lumbar MRI showed no signs of nerve danage. She did say there was no treatment for my foot numbnesss as I have had it too long to benefit from treatment but I will get used to it in time.
In any case I will keep using my stick for now.
With best wishes
Dear Alison
Thank you for your reply and your suggestion of using walking poles. I have noticed folk using them in the street but I must admit I thought they looked quite difficult to use and would require a lot of energy. But from what you say, it is more a matter of getting used to them. I will try them out in an outdoor shop to see what I think. I take it you have to use two of them, rather than one.
With best wishes
Two work better than one for me. The nuisance then is no free hands, of course, and my handbags are now all of the cross-body sort, or backpack-type. It’s a small price to pay for being able to get around much better.