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So given the large numbers of experience that generally resides here I thought I’d pose this to you all.
Earlier this year I was diagnosed with Multiple Sclerosis which as you can imagine has caused one or two “issues” especially with “everything else that has been going on”. Yesterday I got out on my mountain bike for the first time in probably a year and the results were “mixed”. One of the issues I have is that my vision gets “washed out” whenever exercise which is not ideal when it comes to biking. Does anyone else experience similar issues when riding and if so how do you cope with it? I should add that it was very bright so it may be the case that I just need to ride when conditions are cooler. I’ve been riding on the road loads and whilst I get similar symptoms it’s less of a problem in quiet lanes for obvios reasons.
Sorry to hear this gonefishin. I can't help with your query directly, but just thought to post this in case you're not aware of Andy McKenna ...
https://www.stokedonms.org.uk/
Gonefishin - really sorry to hear that, sadly my sil managed to carry on riding but only as a stoker on a tandem which isn't an option for you I guess ☹️
As i expect you will be aware the problem may be associated with optic neuritis which may mean suggestions from riders who have visual difficulties arising from other causes may be of limited value to you. I'd guess - but am not sure - that vibration off road isn't going to help, and that the more rapid visual processing (e.g. riding through singletrack) is going to be demanding on the optic nerve....maybe in a way that riding on a quiet road isn't. But I'm basing this on thinking about control of the eyeball itself rather than visual information processing per se.
Sometimes optic neuritis is affected by temperature. Do you have a neurologist or MS specialist nurse you can speak to?
If your MS is relapsing-remitting type, then you might experience flare ups that then gradually subside.
All the best with dealing with it all, gonefishin.
I have MS and ride MTB quite a lot. I don't think that I've experience "washed out" vision, my eyesight does go blurry if I get really cold though, e.g. swimming in the sea. Heat is also definitely a thing that affects a lot of MSers, as is cold for some. The heat really does a number on me and I try to avoid riding when it's hot. If I get too hot then I lose most of the power in my legs.
As rexated says it could be optic neuritis related. I have experienced that but pre diagnosis and it manifested as my right eye going blurry for a few weeks. It did go away again and hasn't recurred. If I were you then I'd ring my nurse and see if they have any advice.
Former optic neuritis sufferer here. The colour vision in my affected eye is pretty washed out all the time - bright yellows and oranges aren’t as vivid.
I’ve not got MS, but when I thought I might have, I did a lot of research. Heat is definitely not your friend - and that includes getting hot through exercise. Some RR sufferers really struggle in the summer months.
If you’ve not come across it before, consider looking at some of the Overcoming Multiple Sclerosis regimen stuff. It might help.
https://overcomingms.org/
Good luck!
No experience to offer. But thought of this.
Have you seen "the way Bobby sees it"
About blind mountain biker Bobby McMullen. He uses a guide/navigator to lead and call out directions or actions like a rally navigator. It's amazing.
Thank you all for your kind words and support. To answer some questions it is an optic nerve issue (Uhthoff’s phenomena) and heat is a big trigger. It may be that I have to change the way I ride by stopping and resting a bit more often. It’s very early days for me so I’m still putting strategies together in my head. I might have to get back to night riding or maybe use this to justify an ebike.
I do have access to the Nurses but I strongly suspect from other conversations that they normally focus people who are far less mobile and able to exercise, and rightly so. My symptoms are fairly mild so whilst they are real and important to me, in the overall scheme of things I’m “fine”.
One thing I am currently enjoying is the boost that the course of steroids I’m on is giving me 😎
MS is kind of specific to the individual but "It may be that I have to change the way I ride by stopping and resting a bit more often" is an approach I've taken by and large. Both from a heat and recovery point of view. I tend to do better on group rides than solo because there's usually more stopping.
It’s very early days for me so I’m still putting strategies together in my head
Listen to your body and keep trying and learning, it took me a while but I'm in an OK place with my riding now and I know how I have to deal with weather conditions.
I do have access to the Nurses but I strongly suspect from other conversations that they normally focus people who are far less mobile and able to exercise, and rightly so. My symptoms are fairly mild so whilst they are real and important to me, in the overall scheme of things I’m “fine”.
I'm in a similar boat but in my experience the nurses will give you the time if you ask them any questions, they've seen a lot of people so have the knowledge to give good advice. Mine operate on a "leave a message and we'll phone you when we get the chance" deal. It's usually just a quick phone call anyway.
Oh, and I loosely follow the Overcoming MS protocol but I'm not convinced that following it strictly had any benefit for me. I still relapsed whilst trying to follow it to the letter, I've now been "not active" for a few months despite not following it closely for a couple of years. Make of that what you will, could mean something and could mean nothing.