Hi all. Well neuro app was a right waste of time!!! Says he hasn’t received the copy’s of MRI scans but I have since found out he has and his sec just hasnt passed them to him!!! Fuming!!! I am thinking of going elsewhere seen as he made me feel this morning like u am making it all up coz he isn’t ready to “officially” dx me!!! Ordered another MRI of my head neck and shoulders. I am so unhappy I have been in tears all day! My family keep telling me to keep my chin up and not to worry about it but how can I! I have walked about like a zombie today and for the last week not knowing what to do!! And to top it off I am having another bad attack of ON in my “good eye” so am seeing ophthalmologist on Monday!!! Down and depressed!!! Steph!!!
Really sorry to hear that Steph. Must be so annoying and worrying for you and for your family too.
Hopefully you have another appointment booked for him very soon and you will get some answers.
ON is awful… I have had it in both eyes for over 4 months so I know how horrible it is. Very painful too.
Wishing you well and please take care of yourself
Thanks. Yeah it’s very painfull I have had it going on 13yr now but my attacks are getting worse and worse!!! Not seing neuro for another 3mnth. Steph
Oh my word… ON getting worse must be a nightmare! I cant imagine my ON getting worse as both my eyes are affected and my sight is shockingly bad most of the time now
Three months is a long time!! Can you change that to sooner? I know my hospital is just so terrible with appointments, my GP tried to change one optho appointment for me, and they phoned me later in the day (sounding very pleased with themselves) to give me an appointment that was actually two months later than the first one! So my wonderful GP phoned them and I got an appointment for the following week Hopefully your GP is great and supportive too as its so important that we at least have someone to turn to!
*I meant ON getting worse as in the pain I have! Would be horrible to have more pain
I know you’re seeing your opthamologist on monday but can you not make an appt with your GP in the meantime. Maybe he can chase up the appt for your mri so it’s sooner rather than later and then arrange for your neuro appt to follow?
Other than the fact that it’s all been going on for 13 years I don’t know your story / history, but if you do decide to see another neuro (instead of your current one) then keep in mind that he’d probably want to start from scratch and run his own tests
Maybe see what your GP (and ophthamologist) can achieve first and then depending on what your next mri shows find out where your neuro intends to go from there.
I hope the ON clears up asap. I’ve had it three times myself and know how painful it can be
Wishing you well
Thanks guys for all your comments. Steph x
Hi Steph, it
s disgraceful when we turn up for appointments, get all anxious only to be told they havent got what they should have and we are no further towards a dx.
The system flabbergasts me all the time.
I see you and I have been on this
no where road a long time, eh? 14 yrs for me.
Stephanie - not surprised you are down and depressed. When your neuro hadn’t even looked at your MRI scans. Were they just from one time period. I ask as I was diagnosed from changes to my second MRI. No way am I wanting you to be diagnosed but maybe from your next mris - at least he’s ordering those. He can then compare the two at your next appointment. Hope this makes sense But still really cross and angry for you too Hugs Minxx
Why are people still getting treated like this it’s just terrible. I would just keep ringing the neuro until he does something. Sending you big hugs Xx
Hi all still no news but I now have the disc with all my MRI scans on then i can personally hand to my nuro next time I see him!!! The bad news is I am have another major attack on my “good” eye so back on the heavy meds. Also my BP is sky high now so have to have a 10 hour monitor on tomorrow for that! Not in a good place at the min! Thanks for all the support Steph xxxx
I don’t know how you’ve had the patience to wait `13yrs and still not have a diagnosis. Hearing stories like yours makes me feel like I shouldn’t moan not having answers after a year and a half of symptoms.
I don’t know your story or if you’ve got any lesions on your previous MRI but hopefully repeating will allow him to compare the new and the old. Its not on that he didn’t have the old scan - but I work for the NHS and I see it happen so many times. One person not having done the bits they’re meant to. I always make sure I get a copy of my scans for myself on CD as well as copies of previous blood tests. That way if things go astray I know I’ve always got a back up and I’m not going to have to start from scratch.
ON is terrible - I haven’t experienced it (thankfully) but its one of the things that scares me the most. So I can’t imagine what you’re going through. Its not on that you have to wait so long to be seen. Is there no eye casualty service near you? I know its not ideal but at least you’re seen and treated.
Staying positive is difficult when you’re 13years on - so I won’t say chin up. Have a fume, get upset, cry - you have every right to and will feel better after it. We’re here for you - fingers crossed the second MRI has answers.
Lots of Hugs