I’ve been on the forum a couple of weeks and as some of you may have read, I’m awaiting a neuro referral for symptoms which have, in reality, been ongoing for quite sometime now and because of a recent infection, have left me utterly fatigued and unable to work.
I’ve been considering ‘going private’ as there is a consultant neurologist (with a specialism in MS amongst other things) who works out of a local private hospital to me. Although I understand the initial consultation will likely be around £200-£250, I am suspecting any further investigations (eg MRI/LP/bloods) will be very expensive.
Has anyone else gone down this route to speed things up? If so, what were the likely costs involved? Living in limbo is difficult enough without this affecting my ability to work right now.
I’ve been told by the local NHS Hospital I’ve been referred to that I could be looking at a 16 week wait to be seen… I really do appreciate that if this is MS or something else chronic there’s no benefit really in an early diagnosis (well other than start treatment if indicated) but I think it will make me feel more ‘valid’ if you see what I mean…
My contract of employment states that I should be proactive about my health if I am off sick so see this as one of the possible options available to me.
Any thoughts or can anyone share any other thoughts that might help.
I was told the same waiting time as you originally, so I decided to go private. It turns out that I saw the same neurologist as I would of seen on the NHS. I had an intial consultation plus a follow up with neurologist and MRI scans done by a company whom he recommended. THe neurologist fees were £325.00 and the MRI’s were £490.00. Once I had the follow up appt with him, which is when he told me that MS was suspected (I’ve since been diagnosed) he then suggested he ‘put me back into the NHS’ so I now see him through the that. Was it worth it?.. I say definitley, purely for my own sanity- I have two fairly small children and waiting 16 weeks for an appt when I had been having symptoms (mainly double vision, extreme fatigue etc) for the previous few months, was not an option I wanted to accept. Good luck with whatever you decide and with any results you get.
I was expecting the MRI to be in the thousands so that’s reassuring to hear, though of course appreciate cost may depend on where you are referred for the scan.
What appeals to me too is everything you say (children/sanity/symptoms) and that the neurologist I could see privately (after a more extensive search on Google earlier!) is leading some clinical trials with MS at the NHS Trust he is based (though this isn’t the most local to me) and also lecturers on neurological disorders at Kings, so he sounds pretty experienced in the condition.
I really appreciate your thoughts. Will discuss with husband tonight and if he’s in agreement, will make a call to his private secretary in the morning.
The MRI scans were done near Waterloo, London so I am guessing that this could be a higher price anyway then some - I thought the same as you on cost and as far as I can remember that was two different areas of scan as well, one of the brain and one of the optical nerves I think, although don’t quote me on that as it all still confuses me but I remember them saying it was two scans I needed. There were different costs depending on the time of day/week you went. Also once the neurologist said I needed the scans he was prepared to put me back in the NHS then too but it was going to be approx 6-8 weeks wait so I decided to have them private but that is also an option to see him initially and then depending what he says maybe go back into the NHS to have the MRI scans.
without 20/20 hindsight this can be tricky. I took my self for private consultations twice. Once was a total waste of money & effort seeing the same muppet but quickly , a complete wash out.
BUT the second time was a revelation and worth every penny. So I would say that on balance it is worth trying to get good info as soon as you can.
I went private and it cost me £160.00, my mri scans were done on the nhs. I would suggest you do your research first, i chose a neuro that came highly recommended. I had my diagnosis within a couple of months of seeing him.
Check out which NHS Hospital your private neuro works at.
If he/she refers you back into the NHS, it will likely be to themselves, and it is nice if you can get to them without too much hassle.
I went down the private route and only found out about the re-referral when one of his colleagues rang up to arrange my lumbar puncture.
well worth doing.
In my 2nd and brilliant private consultation the neurologist referred me to his NHS clinic. I need to travel to see him but the level of confidence I now have makes the effort worthwhile.
Thank you all for your replies. Apologies for tardiness of response, due to fatigue I had an early turn in last night.
There’s some really great advice. The neuro I can see practises from an NHS hospital around an hour away but my local district general has no specialists in MS as far as I am aware so I would be happy to travel to see him there if there is a confirmed diagnosis.
Just to update, I am now seeing the consultant neurologist as a private patient next Friday. Feel as though being proactive has really helped my state of mind about the whole situation. Thank you again for your inputs.
Hello, I’m wondering if anybody here has received a diagnosis of MS having had a clear MRI scan but MS positive lumbar puncture? I have suffered with symptoms of MS for 15 years now, which has been diagnosed as ‘ME’. My MRI scans were clear but I am not convinced that MS is ruled out. I have numb arms and hands, blurry vision, intense headaches all over my head, face and neck, chronic nausea and that awful jet lag-like fatigue which is the worst of all the symptoms. I am pushing for a lumbar puncture but am on long waiting list to see the neurologist. I’m just wondering if anybody has been in a similar situation and what the outcome was? Greatly appreciated!!