Saw my physio today - he discharged me after one month saying if it hadn’t started to work by now it won’t any more now. Great!! My balance is getting worse - now physio says he can’t do anything. All I’m left with now is the first specialist who belittles me every time and has a new explanation every time I go - all of which cancel out his previous theories.
I feel like I.m being pushed around between the two with no diagnosis, reluctance to do further testing and no sign of anything to help me. Does anyone know where I can get a private mri or private neuro (cost?) - I live in southern England) done so I finally feel I am getting somewhere along the route to a diagnosis (whatever it may be). To cap it all, physio left me alone for 30 minutes today whilst writing to the specialist again - then hurried me out because he had another patient to see. Feel really let down by the nhs and had a lot of unanswered questions. Sorry to rant but I just feel the specialists have given up on me.
I can empathise with you on this one. I saw a Neuro two years ago, and, after fully examining me and noticing that my balance wasn’t good, she commented that my problems weren’t coming from my back & weren’t a skeletal problem.
She then said that as my problems all seem to be neurological, that she couldn’t help me any more, and promptly discharged me! That was 2 years ago, and I’ve never seen a physio since.
If you do request to see a physio again, I would suggest asking for a neuro-physio, i.e. someone specialising in these conditions. I know folk have posted on here that balance problems can be helped by them.
I do hope you get to see a private consultant soon & get some real help with your symptoms. Limboland is horrible isn’t it?
So sorry to hear you are getting no where on the NHS. You said you live in the south of England, I dont know if you are close enough but Benenden Hospital is one place you could try. It is possible to be refered there by your GP on a scheme called choose and book but Im not sure if you can do that for a second opinion, always worth a try though. If not I do know they will do MRI privately, not sure of cost though.They have an excellent Neuro there who will do DX and then send you back to NHS for treatment. This is how I got my DX but I am a member of the society so I don’t know costs etc.
Benenden Hospital is in Kent (approx 20 miles from Tunbridge Wells if thats any help) Try looking at their web site www.benendenhospital.org.uk you should find info on location and services.
1 - Google BMI Healthcare. Their website will tell you their nearest facility. You can reckon about £450 for a private MRI, but you will need to be referred. Private Neuro will be on the high side of £100 (depends how long he takes), and I would allow about £150. Remember that someone will still have to look at the scan and interpret it. If you get a private scan, you should also get a full set of images (you have paid for them and they are yours), and you can take these to a new NHS Consultant,
2 - Use the search facility on the home page for the MS Society to find what is available near you. This may help if you need to get your GP to refer you to another consultant (remember that is one of your rights).
3 - Remember that your NHS Consultant may also work at a private hospital, and you need to do a little research before committing yourself to anything.
4 - Some private consultants will see you on self-referral, some want a letter from your GP.
5 - Did you get a copy of the report from your neuro to your GP? If the guy keeps changing his opinion, that is a good reason to ask for a new referral. If you do not get copies, then this is a breach of the NHS Charter. You have an absolute right to see these reports within 42 days (I think) of a consultation; after that you have to pay a small fee. But you can always complain to PALS that you are not getting the reports.