Hi, I’ve been dipping in and out of forum for a few weeks now and have found it reassuring to find there seems to be support before diagnosis, this is my first time posting, probably because I’m struggling a bit. I’m a 42 year old mum of 3 and have always been fit and healthy, running marathons and exercising 5 days a week, I ran my latest marathon at start of June and a couple of weeks later noticed blurred left vision in my left eye. I had no other symptoms at time and a clear MRI scan followed. Since then I’ve had tingling in my left hand, severe cramping in my left calf, a strange sensitive burning feeling in right hip, none of which have been anything other than weird and mysteriously have came and went. I still have the Optic Neuritis though. The thing that I’m struggling with is this awful fatigue, it hit me like a brick wall a few weeks ago and it literally feels like I’m dragging myself around, I’ve zero energy and am starting to feel really low, I’ve tried to run a few times to shake it off but have been felt completely depleted of energy, not sure if I should continue trying to run or give in, it’s the fatigue that’s prompted me to take the big step of joining the forum as some advice on managing fatigue would be helpful. I had a lumbar puncture a few weeks ago and results have been forwarded to an MS specialist, I’ve my 1st appt in 2 weeks time, really need some answers as it feels like someone’s pressed the pause button on my life, and I would just like it back please, hope I don’t appear too sorry for myself folks, I’m normally a pretty happy chick!
It would be nonsense to pretend that all was well so you sounded relatively upbeat to me. We know how it is on here so don’t worry about that…
Fatigue is my biggest problem though it also exacerbates my lack of coordination. My priority is not to be dangerous and then to reserve enough energy not to be totally wiped out - enough to do do what I need to do. It takes so much longer to recover from MS fatigue than good old healthy exhaustion! The 2 tips I have been given and found useful is 1) that your energy is a finite resource over a certain period - there’s only so much to be used to do things, 2) to break activity in to stages so as to let yourself reharge a bit. As for running I guess the matter would be do you then have energy to do other things that you rate as more important?
A few other thoughts came to mind as I read - so here they are - not well organized.
Have you reported the new symptoms? If not they should want to know.
Was there a 30 day break between the ON and new symptoms if not it’ probably all part of one episode.
Was your MRI with contrast? It’s needed to pick up new smaller lesions and does indeed seem standard practice for that reason but there have been cases on this forum where it was over looked.
I hope you find a way to stay satifyingly active.
Thanks for replying to my post, its quite a lonely place in limbo land but helpful to know others in similar situations. I’ve always been a positive person but the fatigue and inability to do the things I enjoy are chipping away at me and I’m feeling quite scared if I’m totally honest. The ON was the only symptom I had at time of MRI, not sure about the contrast question you asked, was just told the scan was clear and to contact the hospital again if any more symptoms appeared. The consultant who I saw was in an Assessment Medical Unit in the hospital, the neuros on hols til end of August! I was brought in for LP after explaining new symptoms, that was 3 weeks ago and the wait for neuro appt is agonising, there hasn’t been a 30 day break, the ON started around 13th June and other symptoms between then and now. Am grateful for your advice about fatigue, think I should maybe just walk the miles for a while to conserve some energy maybe, should have mentioned, I’ve had July and August on school hols, I work as a teaching assistant and start back work tomorrow, hope I can manage work ok, it’s difficult when there’s no dx. I hope I’m not rambling, you said the fatigue exacerbates your lack of coordination, I’ve noticed my legs and arms feel clunky and I’m not gripping my fork properly with left hand, also the ON seems worse when the fatigues bad. Thanks again for replying to my post, you’ve been really helpful, Lucy.