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My Neuro won't commit to DX me despite MRI shown up.

My neuro today said "you have enough on your MRI (white spots on the brain on either side, plus on the spine) and with your attacks, but I am sending you to my boss to see If he will DX you with MS as I am just not 100% certain due to the cost of the meds). Is this normal ? My wife & me left the appointment with the same feeling “because of the cost he don’t want to commit him self”, I now have to get a lumba puncture (which might now show up anything)

Hi Stephen, That’s absolutely appalling! The “cost of the meds” should have absolutely no bearing at all on diagnosis. The only consideration should be whether the clinical evidence criteria are met. Trying to be fair to him (though it’s hard), perhaps he is quite junior, and more nervous of getting it wrong, due to the possible bill to the NHS (though you’d have thought there would be better reasons than finance to want to be sure). Perhaps he means there is still some uncertainty in his mind, for whatever reason, and it was a bit unfortunate he linked it with money. If he’s referring it upward to somebody more senior, you should get your diagnosis, regardless of money, IF the evidence supports it. Most neuros still don’t like to diagnose without LP results, but I refused the LP, and was diagnosed on clinical symptoms and MRI evidence alone - so it IS possible. But either way, the budget should have nothing at all to do with it. The only thing that’s relevant is sufficiency of evidence. Even if you do get diagnosed with MS, you wouldn’t necessarily present the NHS with a big bill. Not everybody who is diagnosed is eligible for treatment, and not everyone who is eligible elects to have it. So he’s making an awful lot of assumptions, if he thinks everybody with MS costs the NHS a lot of money. Tina

Stephen-G wrote:

My neuro today said "you have enough on your MRI (white spots on the brain on either side, plus on the spine) and with your attacks, but I am sending you to my boss to see If he will DX you with MS as I am just not 100% certain due to the cost of the meds). Is this normal ? My wife & me left the appointment with the same feeling “because of the cost he don’t want to commit him self”, I now have to get a lumba puncture (which might now show up anything)

All sounds a bit odd to me. You’ve either met the criteria for diagnosis or you haven’t, surely? Is your neurologist an MS specialist? If not, perhaps he/she wants you to see the senior one because he/she is? I think you need to get in touch with your neuro again and insist on a phone conversation to explain where things have reached and what the issue is, and why he/she thinks you need a lumbar puncture. I had one because the neurologist said he wanted one to have a complete baseline picture of my condition on the file, although he would have confirmed the diagnosis without it. In other words, it was optional, and the choice was mine, as it should be. What you don’t want is to be pressed into an LP that you don’t need. TIme to put your foot down and wring a proper explanation out of them, I think. COuld be they’re arse-covering. Or there might be a perfectly proper reason. But they need to explain it to you, don’t they? Alison x

BTW, I think this is a good illustration of how useful it is to have another person with you at this sort of consultation (I’ve had my OH there on these occasions too.) SOmetimes if you are there on your own and something baffling happens, you think afterwards that you must be misremembering, or going bonkers. Very reassuring for there to have teen two of you who heard the same thing! A x

Hi Thanks Tina & Alison for the relpies, yes me and the wife are baffled with what he said. Even the nurse looked at my wife and pulled a face when he mentioned “the cost”, I said to him straight away “so this is all down to cost” ? Since posting this today I have found out (spoke to neuro sec) he can’t referr me to see this doctor he mentioned unless he DX me with MS ?? The LP is in 2 weeks (got a cancelation) so am going to get it done as I know he will no doubt insist I get one just to keep him right. I believe they should send out letters after appoitments to say exactly what the outcome of appointment was, this way you have proof what was said. I will now have to wait and see what happens now that I can’t see “his boss”. Just another day in limbo. :frowning: Stephen.

Hi again Stephen, It sounds like the “other” bod is possibly the DMD prescriber then, if you can’t see him unless you’re already diagnosed. But maybe you don’t need to see him? Perhaps Neuro 1 is just going to review your case with Neuro 2, to get his view? But it’s all a bit confusing if they still want you to have more tests (the LP). That suggests it has nothing to do with money or the senority of the neuro, but just that they don’t have enough evidence to be certain. That, unlike the money thing, is a legitimate reason to refrain from diagnosing. As an aside, I always do get a copy of a letter from my neuro to my doctor, outlining what took place, and what (if anything) we agreed. I think it’s good practice, although they can’t actually be forced to do it. But you might receive a letter anyway, in due course (sometimes it’s weeks after the appointment, as they’re not exactly quick). If you’re not happy with progress, or the explanations you’ve been given, you could always go back to your GP and ask to be referred for a second opinion. That is your right. Tina

Hi Tina. I have just tried to call the neuro secretary as am not happy with today’s appointment outcome more so that my wife was present and heard everything (she is a nurse) and she is confussed by what he said, the fact at I can’t get to see this other doctor now (his boss) and his sec said “he should not of said this as it’s wrong” kind of makes me wonder if he got everything correct in our meeting. She is finished for today I will call again tomorrow. He stated to me (and my wife) “I have all the right things for MS, but due to the cost of the meds and the fact you are on them for life he has to make sure I have MS as it works out expensive and the meds have to go to the correct people”. This is what he said above, like you’s I felt the same “I either meet the criteria or I don’t”, to me he is sitting on the fence here. :frowning: Stephen.

Stephen-G wrote:

My neuro today said "you have enough on your MRI (white spots on the brain on either side, plus on the spine) and with your attacks, but I am sending you to my boss to see If he will DX you with MS as I am just not 100% certain due to the cost of the meds). Is this normal ? My wife & me left the appointment with the same feeling “because of the cost he don’t want to commit him self”, I now have to get a lumba puncture (which might now show up anything)

hi this is absolutely disgusting but i think that his sentence slipped out unintentionally and it just gives you an indication of what goes on behind closed doors. do they really put off diagnosis due to costs?? it really wouldnt surprise me… i think he will be in for a bit of a trouble from his seniors, but would he have said that had there been no truth in it?? i dont think so. cynical i know but it can make you feel like that when you’ve been ill for 7 years as i have. i wish you all the best in getting this cleared up and if my opinion is right they will be hanging on to your every word and trying to placate you so that you dont register a complaint. mandy xx

There is a very clear guideline about diagnosing MS by NICE. It has absolutely NOTHING to do with the cost of meds - that is an entirely different conversation! I think this neuro you saw might be very inexperienced? You definitely need to push to see an MS specialist. Having to have a diagnosis BEFORE you see this senior neuro is a nonsense! Maybe your GP can get involved? Don’t let them get away with it!!!
London77 wrote:

I’m confused by this talk of expensive Meds my specialists view is that there is no evidence to prove they do any good although he has once again just put me on steroids. Took me ages to get a diagnosis had every test going including an unpleasant LB. My GP said at the time it’s because they hate committing to a diagnosis of MS in case they have somehow got it wrong and end up getting their ass sued.

I am very confused why any neurologist would say that there is no evidence to prove that DMDs don’t do any good. The simple fact is that there is loads and loads of evidence that they do! Even the less effective meds make a significant difference in the number of relapses that people with RRMS have and the more effective meds (e.g. Tysabri) can make a massive difference: ~70% reduction in relapses and a significant reduction in progression (sorry, I can’t remember the %). Steroids, on the other hand, do absolutely nothing to reduce relapse frequency. Strange priorities your specialist has. Is he/she actually an MS specialist? Karen x

Hi Thanks for the new replies. My wife is in work right now asking “what can I do next”, she works in the same hospital as my neuro, am not leaving this as I said “both me and my wife left the appointment with the same thought, I have MS he would not committ himself to say and hit behind this cost excuse”. the fact that I pushed him on the “cost” and he could not give me a reason as to why he could not DX with MS has caused me to follow this up, am not one for kicking up a fuss more so with the NHS as I know how hard they work ETC; Thanks again. Stephen.

Hi Stephen, Just a small point that may help - For every appointment there should be a clinic letter which outlines what took place and what the next step is. This dosen’t mean to say you automatically get a copy! But you are entitled to one so I would request this from Dr sec. Also some times they do not include all the details, & sometimes all the details are not correct- always query this. It is something I have learnt over the past 2 years. The letters then make a record of what has been happening. If you get past from Dr to Dr it is what they read as they can’t read each others hand writing either! You also know that if you have been referred for tests or to another dept. that until you receive a copy neither has the other departtment. The other thing you could do is contact PALS they are excellent at getting things sorted and fast- every hospital has one. Hope this may help Twist

Hi All I spoke with my Neuro secretary and she has left me in a clearer picture she said “when ever any of our paitents have a MRI and anything shows up it’s OUR criteria to send them for a LP, your neuro works by our criteria as he is only in he on short term (locum), maybe because he is not English he never put it across properly to you and used the wrong words”. Now that seems a bit more logically to me I can understand this now. I get my LP two weeks today so I will just go through with it and see what the outcome is. PS London77 I have asked for copy of my appointment notes. Cheers Stephen.

Hi Stephen, That sounds more reasonable, at least. It’s not at all unusual or controversial for a neuro to be hesitant to diagnose when the evidence is incomplete. But what was worrying in this case was the citing of money as the reason! Which should have nothing at all to do with it. I don’t entirely agree with sending everyone with abnormal scan results for an LP, as this is rather old-fashioned, and it’s possible to diagnose without (as happened in my case). But it’s interesting that your hospital insists on it regardless. This seems to be true at a lot of hospitals, even though NICE guidelines now suggest LP should only be resorted to where sufficient evidence hasn’t been forthcoming by other means, and NOT as first resort, for everyone. Unfortunately, many patients are left with the impression LP is compulsory, and that they cannot get diagnosis or help without one - which is not strictly true. Tina

Hi Tina. I agree with what you are saying, afterall a LP may not show anything up, yet I could still have MS. I will get it done then go from their if that’s the hospital crietria I will follow it so I have done everything asked of me if it is to come down to me seeking 2nd opinions this way the hospital has no come backs at me. This illness really is a rollacoaster and that’s just to get a DX :slight_smile: you have to laugh or you would snap. Stephen.

Sounds like this neuro is still ‘wet behind the ears’. Push to see the senior MS specialist asap Good luck Clarexxx

Stephen-G wrote:

Hi All I spoke with my Neuro secretary and she has left me in a clearer picture she said “when ever any of our paitents have a MRI and anything shows up it’s OUR criteria to send them for a LP, your neuro works by our criteria as he is only in he on short term (locum), maybe because he is not English he never put it across properly to you and used the wrong words”. Now that seems a bit more logically to me I can understand this now. I get my LP two weeks today so I will just go through with it and see what the outcome is. PS London77 I have asked for copy of my appointment notes. Cheers Stephen.

That sounds like good progress. My bet is that the neurologist’s secretary will be rolling her eyes because yet again she is the one who has to explain things to the patient, not the ‘expert’ who is paid 4 times what she is… Hope the LP goes well. Alison x

Hi Steven I wondered how long before the cost of DMDs would rear its ugly head! :evil: I did see several Neurologists before I received a total diagnosis and had to have a chest xray to rule out some other condition but I only had to have an MRI, no lumbar puncture and after a year, we realised that the MS was still active and I was allowed Betaferon, I only hope I am allowed to stay on it when I see my Neurologist at the end of the month. I fear with the lack of money we are all at risk of loosing out. Good luck with getting some treatment, if you are unable to get drug treatment I suggest you get in touch with the Campaigns team of the MS Society. Take care Wendy