Today I have been diagnosed with ON… for the third time this year!
I have no dx of MS as clear spine and brain MRIs. The opthalmologist told me that if I had a dx of something there would be a protocol as to what I get (steroids etc), but with no dx I don’t get offered anything. Im seeing my GP next Wed anyway so hoping she puts me on steroids again as they definitely helped last time. So all the opthal. has said is to try Neurofen for the pain behind my right eye, he’s a great bloke, but as he said, his hands are tied.
I see Neurologist again in December so I really must start writing this all down.
Am looking forward to seeing the back of this year! No way can any other year be this bad!
Wednesday is a long time to wait Paula. If you give your neuro’s secretary a call he/she may be willing to prescribe them and they can fax a request to your GPs.
Hi
I’m not diagnosed but have had ON which totally blinded me. I had IV steroids, I think oral steroids can make it worse. I would ask to see your neuro urgently. Can you ring your GP for a telephone consultation. I email my neuro’s secretary which works quite well.
gosh you are in the wars. It really doesn’t sound great that you’ve had optic neuritis again! Is it the same eye or both eyes you’ve had it. I would try ringing one of the other neuro secretaries. Surely somebody must cover when this secretary is away - it’s what happens in our department. It really sounds like you need to be seen quiet soon.
I know you were so pleased you were driving again and then now…
What investigations have you had? I can remember your MRI/EMG I think being normal. What bloods did you have and what other issues have you had aside from optic neuritis?
Really hope it gets better soon or at least doesn’t get any worse. I’m sure the stress of the last few weeks is taking its toll on you so please do take it easy.
The ON started in the right eye beginning of April, then 5 weeks later the left eye was also affected. This time its the right eye again. The way the switchboard works is that I can’t ask for anyone covering for sec. I have left a message, but will try her again Monday now.
Shh but I am still driving - but while right eye is quite blurry it is not totally so Again, my driving will be kept to a minimum.
I have had MRIs both normal. Blood tests (seemed like millions of them) all normal. I have an EMG in November, and Ive had evoked potentials too.
I did think that it may all be related to the stresses I have had, and I am particularly tired again at the moment too. I have been resting up as much as I can (Mum needs me too) and I have been sleeping for 10-12 hours every night!
The other issues i have are numbness, pins and needles, my right foot turns outwards (didnt used to!), terrible pain in my hands and feet, and burning pain in my feet, balance issues, tremor, rib pain on the left side, forgetfulness, awful brain fog (where I cant even remember the name of everyday items), blah blah - I have definitely forgot some other things too!
Oh my goodness, so sorry you have so much going on at the moment. It must be so frustrating not knowing for sure what’s causing it all and hitting so many walls trying to get help because of no dx. I know how difficult it is getting gp appointments. Since my symptoms started in march, i have been dx, seen neuro twice…but still haven’t seen my actual GP! My surgeries appointment system is awful! I have seen a lovely GP(who to be fair was amazing) just can’t get to see my GP. Hope yours isn’t quite that bad. Sounds like you should try and push to see neuro, three times in one year must be awful. Sending hugs. Mish x
Again, my driving will be kept to a minimum.