I have had a CT and a MRI which indicates that I am likely to have MS.My GP has referred me to a Neuro but today I have been told that my case is classed as routine and expect to wait 14 months to see one.
My main symptom is a tremor in my left hand which has got a lot worse in the last month and some drop foot on my left leg.
The lady I spoke to at the GP said if I want to speed things up maybe go private.I guess that this will cost about £200 which is affordable but I was wondering if it is worth it or not.
Routine??? That’s crazy. If you do have MS, and assuming it’s relapsing remitting (the most common type), the sooner you start disease modifying drugs the better. For which you need to see a neurologist. But you shouldn’t have to wait more than a year to see a neurologist on the NHS. Does your local hospital have a PALS service? (Patient Advice and Liaison). If so, you should contact them to ask for advice about how to get an earlier NHS appointment. And of course, you may not have MS at all, an MRI may show up likely MS, but it’s not usually definitive on its own. A neurologist would probably do other tests before giving you a firm diagnosis (lumbar puncture typically plus others). The last thing you want is to live like you have MS for over a year and then be told it’s not MS!
I am in Wales so it is CHC rather than PALS.I contacted them after I saw my GP for the MRI results as it was handled very insensitively at the time.
My GP basically said that I have MS and have had it for a long time but trot off and get on with it.The CHC did contact her and she rang me and said that I was told it was likely not definite.
From what I was told today the MRI is sent to a Neuro to look at and they decide if it is classed as urgent or otherwise hence mine being classed as routine.
14 months! Good grief. Well, I guess it boils down to whether you are in a hurry to find out what’s the matter or not. I am not being facetious; it’s a serious question with no obvious answer - it is by no means necessarily always good to go chasing after a diagnosis at double speed. Most of us, once we steel ourselves to ask the question about what ails, do just want to know the answer. But waiting and seeing is a perfectly respectable alternative if that is what you prefer. It really is up to you, this one. For what it’s worth, I would get the cheque book out. But I’m not you.
I only rang today as it has been 6 weeks and I thought that there might be some news
When my GP told me that I had MS I was totally gob smacked as it was the last thing I expected to hear.I presumably must have something wrong as the CT and MRI showed changes and it would be good to know what it is.
The other issue is that I could afford the consult but not anything else privately and I am not sure how that would work out.
I think you should probably establish whether you can see a neurologist privately initially, but then get a prescription for DMDs and a referral back within the NHS. The cost of DMDs is way beyond what most of us can afford, and ongoing private healthcare would be I imagine prohibitively expensive. So the question really is whether seeing a private neurologist in order to get a definitive diagnosis one way or the other is going to bump you up the NHS queue. If ultimately you will still have to see an NHS neurologist for an NHS prescription, and therefore wait more than a year, then your best bet is actually to complain far and wide about the delay in seeing the Neuro. The NHS guidelines for Wales must be somewhat similar to those that exist for England. If you have no luck with your GP and/or the CHC then try your local MP. 14 months is way too long to wait for DMDs.
I got referred urgently in November and would not have seen the Neurologist until May. I was getting worse and knew I couldn’t wait so at suggestion of GP Receptionist and Consultants secretary I phoned the private hospital the Consultant I was due to see on the NHS works at. That was February and I saw the Consultant 1 week later. Cost £250 he was great saw him once private explained I couldn’t afford to stay private bounced straight back to NHS 3 days later had MRI on NHS. Diagnosed within one month. Consultant I saw has treated me no different on the NHS.
Bassetmum, Snowqueen’s experience is broadly similar to mine and tends to be typical, I think. You need to make sure that the neurologist you see privately (if you do) is also the NHS one near you (they usually are). Your GP ought to be able to help with this, and you can get further info from the ‘near me’ orange tab above - this will tell you who does what where you are.
Yep, I had an MRI after being referred to spinal unit, and I couldn’t fet the result, it all went quiet… I was referred to Neuro and the wait started (not s long as yours but still a wait!), I phoned surgery when the appointment came thru and spoke with doctor’s secretary and asked if there was anything could be done, she said yes, leave it with me - new appointment came thru so only had to wait a few weeks
Hi, the thing is, you need to be seen fairly quickly, because depending on which type of MS you have…if you do have it…will determine what treatment is the right one.
14 months is plain silly and wrong!
But I am glad to read your latest gp is better and helping you.I saw my first neuro privately, as there was a ,10 month waiting list on NHS. This was back in 1999. I paid £200 and then saw the same neuro on NHS.
To be honest, I still think that’s unacceptable. Urgent should mean within a couple of weeks, not 3 months. If there is a complaints procedure, I think you should find out what it is and complain. I understand that sometimes you don’t want to start your relationship with a hospital / doctor etc by complaining but you know, if you have relapsing remitting MS (which is most likely as it’s the most common) you need to start DMDs as soon as possible.
Most DMDs won’t start properly working for several months after you start: my neurologist told me Tecfidera won’t be properly effective for 6 months after starting. So if you have a 3 month wait to see a Neuro, then another say 3 months to have the other tests, then a follow up appointment with the Neuro. Then he/she will recommend treatment options and you’ll have maybe another 6 weeks wait to start a DMD. Then, the chosen drug won’t start reducing relapses for several months. Do you want to wait a year for effective treatment to start working? MS diagnosis and treatment is supposed to be different now.
I’m not sure this applies to Wales, but it’s an NHS.uk site so I think it does.
You should see your consultant within 18 weeks from non urgent referral. If that doesn’t happen the NHS should be investigating to offer alternative options. Check out the website for how to make a complaint.
My appointments always come through exactly on the 18 weeks mark, but when one was cancelled with no date for a replacement I phoned the neuro team and laid it on thick, asking what alternatives they could offer - suprise suprise I got offered a cancellation three days later.
You shouldn’t have to make a complaint or fuss, but it can work when you do.