Hi, was having a reasonable day until the mail arrived!. There was a letter from the hospital, my follow up appointment with the neuro on 11 Dec has been cancelled and re-arranged for the 29 Jan.
I’m due to have my MRI on brain and neck/spine on the 11 Nov, so of course panicked as I didn’t want to wait till after xmas for results. I phoned the appointments number and spoke to a lovely lady, who told me the neuro had cancelled almost 50% of his appointments. So to phone a couple of days after scan to speak to secretary and if need be the neuro could see me at a different clinic or ward appointment, (depending on results). Is this normal practice or a cost cutting exercise do you think?.
I’m not very good at asking for information over the phone and don’t as a rule push myself forward but I asked for a referral to the neuro from Dr back in August 11 and the Dr only sent the letter in Feb 12 and I didn’t get seen by Neuro till Aug 12 and now scan on 11 Nov - I suppose it’s a bit disheartening and i’m angry because I feel and think confused all the time and in pain alot.
Things arn’t right, and I know there is a problem - I am now in a steady decline and looking back, I can recognise problems from 15 yrs ago. Anyway i’m sorry for my long post and rant but could cry with frustration.
Hi Joanna, I’m so sorry you aren’t getting seen by a doctor when you clearly need to. I’m annoyed too, I’ve been referred by my consultant to an MS specialist and after chasing his secretary today I’ve found out I’m on the routine list and will likely get an appointment in the new year! I’ve had 3 weeks of optic neuritis and 3 weeks of steroids to go with it. I have a feeling I will need the steroids until I can get diagnosed, not sure what impact that will have on my health. The doctors all mention MS but no one has diagnosed it yet. It is such a frustrating process. I really hope that you get your appointment soon get some answers and you feel much better.
Neuros have some flexibility over their clinic appointment lists, just as the appointments lady said, so if something shows up on your MRI, the neuro should be able to fit you in. It shouldn’t be this way, but with a lack of neuros and a growing number of neuro patients, plus pressure to keep waiting times down, this type of thing is happening more and more 
I suggest you give it a couple of weeks after your MRI and start calling the neuro’s secretary. If you don’t get any joy, ask your GP to get involved too. Hopefully you will at least find out what the results are, but it might just get you an earlier appointment, although nothing much happens over Christmas so it may not be massively earlier
Karen x
Thank you for your reply Karen, I’ve had an MRI in September which was before the ON in October which did show inflammation in brain and spinal cord. I have seen a neuro but for some reason he is sending me to see another one to get diagnosed who happens to be NHS and not private. I expect there to be more inflammation around optic nerve given my ON. I’m going to call my GP on Monday and hopefully pursuade them to hurry it along. Currently I can cope on the steroids but worried of things worsening and concerned of long term effects of steroids. In a lot of ways ive been lucky as private health care has meant i got an MRI done very quickly, i was told the urgent NHS MRI waiting list as 16 weeks! so im glad ive got some things dealt with quickly. Thank you for your advice I really appreciate it. Everyone is so lovely on this site. 
Sorry ess, but my reply was to Joanna - I should maybe have made that clearer!
I would be concerned with being on steroids for very long at all. The normal approach for MS attacks is a short burst of very high strength steroids (500mg or 1g for 3-5 days) although oral steroids are sometimes done differently, often with a high dose start and then a tapering off. You should certainly not be on high strength steroids for very long at all though so I think you need to question your prescription.
Steroids do not change the outcome of an MS attack. The most they can do is reduce inflammation which can shorten the duration of the attack so (again) I think you need to question your prescription.
I could be wrong, but I do not believe that ON should be treated with long term steroids.
Seeing an MS specialist is usually best, but there are far too few of them which means that waiting times can be horrific. Hopefully your GP will be able to get things moving for you though!
Kx
Oops sorry Im new to this forum stuff and i mistakenly thought it was to me sorry Karen and Joanna. Good advice though. Thanks for taking the time to send me a reply I really appreciate it. I’ve felt I needed to self medicate to be able to handle the ON. It shouldn’t be this way but wanting to get on with life and the steroids allow that. But long term it’s a bad idea. Will hopefully get GP moving on Monday. Thanks again have a good weekend
Thanks, Karen.
Feel better this morning, although woken up last night with buzzing in left foot and muscle spasms in right knee - I think my body thought it was Friday night at the disco!.
It’s pretty typical of me to have a knee jerk reaction, (in more ways than one), to a letter or info. I understand that they are extremely busy and how lucky we are to have an NHS, patience was never my strong point but so many on here have been waiting so long, my reaction seems a little out of place - sorry.
Thanks for your input, ess. Hope you to get sorted out soon. Jo.
it’s not wrong to be annoyed, I feel the same way! though am a bit happier after I ended up crying in my GP’s office, the next day I had a phone call from neurology saying I’d be put in for a november appointment for a lumbar puncture (after it being a whole year since my first major symptoms appeared and with the neurologist apparently happy to have seen me in april and not bother having me in for another appointment until january). just keep pushing- sometimes the bureaucracy needs that little extra shove to get going. my GP’s angry phone call appears to have been enough to move me back into the “urgent” list so maybe try a visit there first?
I wonder if it might be worth just going to A&E and presenting yourself as an emergency case…make them see you and test you then and there. but that might be bad manners, I’m not very familiar with the NHS still and don’t do so well with “british reserve” even after 8 years of living here 
good luck!