Image from https://www.completepaincare.com/patient-education/conditions-treated/peripheral-neuropathy/
Well, Readers, as you might remember I had a nerve conduction study to try to identify why my feet were so numb a while back, but it was a very simple test that didn’t give me any detailed information. Hah! Scientist that I am, I wanted to know what was going on, and so I was able to get a more detailed test last week.
For those of you who’ve never had one, a nerve conduction test involves sending an electrical current along the nerves, to see how far it will travel. In a normal person, you would expect a reading of about 10. Mine was 2. Furthermore, the consultant (who I think gauged that any news didn’t need to be sugar coated) suggested that if I came back in two years, he would expect to find it difficult to pick up any current at all.
As you can imagine, this is not good news, though I am a firm believer that diagnosis isn’t destiny. And also, I’m not really sure what it means, in terms of mobility or the future. At the moment my hands are fine (they can also be affected by this particular kind of neuropathy). What is clear is that my feet are very numb and cold, with sometimes some tingling or burning thrown in for good measure, though fortunately they are not (yet) painful.
The consultant advised me to keep using my stick, which was a relief as part of me thought that I should be able to do without it. Enough of the ‘shoulds’ already! I actually rather love my fancy walking stick. Plus, it gives me just that little bit of extra confidence when I’m out and about. I am going to pilates regularly to work on balance/strength/all those good things. I have lost the weight that I put on when I was pretty much immobile with my broken leg and living on cake. I have some overseas adventures planned which I intend to soldier on with, including a return trip (hopefully not literally) to Austria, which will be a real test of how much I can do.
So I am, as my lovely Canadian friends say, copacetic. I shall be listening to my instincts about what to do and what not to do, and I shall be living every day to the fullest. I am heartened that my Mum, who also had neuropathy, was still wobbling about in her eighties. But I would love to hear your neuropathy experiences, good and bad, and if there’s anything you do that helps or hinders.
Ah, those lovely nerve conductivity tests. I have post polio syndrome so frigid feet and increasingly iffy balance. I have transitioned from two walking sticks (originally one) to two crutches when out of the house and a wheeled walking support inside as that allows me to carry things. When I’m tired or have to travel long distances I use a disability scooter or my electric trike; I resisted for eons but now wonder why. I also have neuropathy which, contrary to expectations, has been slow to progress, but can be quite miserable at times. I have found that magnesium foam can be very useful when experiencing cramping. Obviously neuropathy is a very individual and personal experience but I have found it useful to talk with others and to explore the literature (always a scientist) as some ideas are helpful. Please feel free to ask me questions if you wish.
Thank you so much for this – I’m sorry that you’ve had such challenges, but it sounds as if you’re making the most of what help is available. I really understand the conflict between knowing that you need something and admitting it! The electric trike sounds wonderful. Thanks for the tip about magnesium foam, I do get cramps but hadn’t linked it to the neuropathy till now. And I will definitely take you up on your offer as questions arise. I really appreciate you taking the time to comment.
Thank you for the post, Vivienne, and letting us know how your diagnosis went. You are such a gorgeously optimistic soul. You lift the spirit.
One possible feature of your condition…when in airports (especially long or exotic ones) you can request a wheelchair to make it easier, and I’ve observed one is able to sail through lines and red tape.
Thank you Robin! You’re the second person to suggest using airport assistance and I think that I might give it a go x
Thank you for sharing this Vivienne, helpful. I have been suffering from hot and tingling feet and it was suggested this could be neuropathy, or a lack of vitamin D. Vitamin levels checked and ok. I also had a nerve conduction study which said all normal. But it was very quick so I was interested in how you got the second more detailed study? I do have spinal stenosis, with a severe constriction in the lumbar spine, so currently suspect that might be the cause. The consultant was non commital. I also get cramps so interested in the magnesium foam suggestion too.