New diagnoses. Advice wanted re meds, waiting times, procedures please

Hello everyone. I have found this site in the hope of getting some advice please.

In the New Year I rapidly developed sight problems and ended up on IV steroids for 3 days. A positive MRI scan and lumber punch has lead to me diagnosed with MS. I’ve now fully recovered from my symptoms thankfully.

While sadly I’m under no illusions that this isn’t MS I was of the understanding MS could not be officially diagnosed until there is evidence of two separate incidents? I had no symptoms prior to this at all. Anyway the neuro wants to ‘wait and see’ before starting any DMD’s saying at the moment it’s too early to consider them as my lesions are few and small etc and its impossible to know at this stage which way the disease will go. Basically he wants to wait until something else happens.

I wasn’t happy about this and said as much and he has (somewhat reluctantly) referred me to someone else for an assessment to see if I’m eligible for meds. This appointment will take 18 weeks apparently.

My questions are:

  1. How will they assess my eligibility? I would assume it’s of the RR type due to my symptoms and recovery. Surely it doesn’t matter how ‘mild’ it is at the moment? I want meds!

  2. 18 weeks is a long time to wait to be seen. I would pay for this privately but apparently it would not make any difference to the waiting time? Is it worth shopping around for shorter waiting times? I don’t know if this is possible but I’m happy to travel.

First, let’s assume RRMS. That is the optical problem and the recovery. Analysis of the fluid drawn off in the lumbar puncture has probably pointed to MS
The criteria for DMDs is normally two separate “clinical” events within two years, and the ability to walk either 100 yards or 200 yards (depends on the DMD).
You might find that the second opinion is exactly the same as the first one (“wait and see”). It will not alter the criteria.

A relapse of any sort - not just vision, could be an attack of total fatigue, or prolongued instability, or vertigo - could well be the second event that gets you the DMD. As my first Neuro put it: “If it lasts more than 24 hours, make a not of it;if it lasts more than a week, get on the phone to us”.

Just be careful. You have to notify the DVLA (if you drive), and your insurance company (if you have a car), and the DVLA will immediately start the process of setting you up with a three year licence. You do not want to do anything that will (for example) lead to a Neurologist’s report that gets your licence taken away.


Hello and welcome :slight_smile:

The main eligibility criterion for disease modifying drugs (DMDs) is, as Geoff has already said, at least two “clinically significant” relapses in two years, but this is in people who have been diagnosed with MS. To be diagnosed with MS, a person has to have at least two attacks affecting at least two areas of the central nervous system. At the moment, that means that you will probably be diagnosed with either “Clinically Isolated Syndrome” (one attack; one area) or “probable MS” (one attack; two areas, if your MRI results demonstrates lesions in at least two MS-typical areas), but not with MS.

The reason that there is a strict rule about multiple attacks is that there is a very good chance that someone who has a single attack will never have another, for example, the odds are approximately 50/50 to develop MS from a first attack of optic neuritis (ON).

There is a way that someone with no previous history can be diagnosed with MS and this is for their MRI to show old lesions which mean that they must have had previous attacks, even though they didn’t cause symptoms (because “clinically silent” lesions, ie lesions that do not cause observable symptoms are common in MS). IF your MRI shows old lesions, then you could argue that you satisfy both criteria, but I’m afraid that you still don’t become eligible for DMDs because of the very subjective term “clinically significant” which basically means disabling / debilitating / serious: it is impossible to argue that a clinically silent relapse was clinically significant.

So, a diagnosis of MS is very unlikely to get you access to DMDs, at the moment at least.

Three important points.

  1. It may not be early signs of MS. ON can occur on its own, it can occur once and never be followed by another neurological attack, it can occur in multiple other neurological conditions including those induced by vitamin deficiencies (e.g. vitamin B12 deficiency) and it can be caused by genetic and vascular conditions. So in your shoes, I would be pushing for a definitive answer about what caused the ON before I focused on anything else - was it definitely demyelination and have all potential causes been ruled out except for CIS/probable MS?

  2. DMDs are not a cure. They reduce the number of relapses that people have and reduce the severity of remaining relapses, but they do not stop MS.

  3. The European Medicines Agency has approved some DMDs for use in CIS. This is based on various studies showing that DMDs can reduce the risk of people with CIS going on to develop MS, I think by about 50%. In some countries (e.g. the US), people with CIS are now routinely prescribed DMDs upon diagnosis, but this is not the case in the UK and I can’t see it changing any day soon for the simple reason that the drugs are too expensive :frowning: However, I understand that any med that is approved by Europe can be prescribed in the UK and the cost be met by the NHS if the PCT believes it is warranted. Unfortunately, it would be a very rare thing for a PCT to agree that any such thing is warranted, which means winning this sort of fight involves multiple legal battles. I’m afraid I don’t know too much about it and I may have got it wrong, but if you are determined, it might be something to look into.


Karen x

Hello and welcome,

I was diagnosed with ms april last year. I had a massive attack to start it all off, i could not feel my legs and tell when i needed the loo (better now). I was sent to neuro who put me on iv steroids and at the same time had a mri and lumbar puncture. The mri showed lesions and the lumbar puncture came back possitive. He then diagnosed me with c.i.s and sent me on my way, with a follow up appointment 3 months later. In the follow up appointment i told him i have a purple/grey color patch in my sight and he sent me to get a v.e.p done. The vep tests the time it takes for the signal to pass from your eye to your brain the effected eye took a little longer than the other. He put the vep down to being another attack and was happy i had 2 attacks in the space of a year and can start dmd’s.

I was diagnoed in april and started dmd’s 4 weeks ago, it does take time.

Goodluck with your diagnosis, being in limbo is no fun. But it is a great sign you have fully recovered.


Thanks for the replies.

I queried the diagnosis with the MS nurse on the phone and she said it’s a definite diagnosis of MS so maybe my MRI scan showed evidence of an older lesion. Apparently I have two. I’m seeing her on Friday so I’ll ask more then. Believe me I really wish it wasn’t MS. As you can imagine it’s come as quite a shock given I have had no previous symptoms. I had nystagmus not ON.

I am aware the meds are not a cure (if only) but everything I have read would suggest the earlier I start them the better. I am aware two drugs are licensed to be used after a CIS yes and I will fight for this. I’m a social worker by profession and not easily brushed off.