Arrrrrrrrggggghhhhhh! - Back in limbo - After all......

Well i’m well and truly confused now. Just as I had come to terms with accepting the news that I had MS and the emotional c r a p which goes with it. This happens.

I saw the Neuro a few weeks back now, where he said (or at least the wife and I thought he said) that I did have MS. He said that a lumbar puncture which is used to diagnose MS is not required, as my treatment of the disease would not change with having a lumbar puncture. The outcome would be the same.

Anyway, a letter dropped through the letterbox on Saturday morning which had been sent to my doctor and I had been copied in.

The letter states that “after studying the MRI head and c spine images, it is agreed that the appearances are sugggestive of demyelation. No further investigations are requested at this current time.”

A letter has been sent to the local MS nurses asking them to contact me as I have now been given a “new” diagnosis of “likely Multiple Sclerosis” and their input would be appreciated.

Is this normal? Should I have told the DVLA and my employer that I have “likely Multiple Sclerosis” and not official Multiple Sclerosis? like I did tell them, much to my annoyance. I wanted to keep this confidential and now I have put myself into a very awkward position at work regarding my ability to work.

What happens now? I guess if i’m lucky I get to see a nurse, but then what? Do I have to wait untill I have another major relapse and I lose control of a limb or bowel or something.

I’m already four weeks into an episode where I am having severe muscle cramps in my right leg and walking is becoming more and more troublesome.

No chuffin wonder youre confused! Any one would be!

But I can relate well to your post, as a similar thing happened to me…no, it happened a few times! I was in and out of limbo myself.

But if your MRI showed clear signs of demylination and your clinical presentations are typical MS…then why has your definite diagnosis of MS, changed to a probable one? I think having an LP would shed more light on the diagnosis. When you speak to an MS Nurse, ask about an LP.

you now have what they call a working diagnosis ie indefinite. You have already told the DVLA and your employer…you cant really untell them, but if it were me, I would tell my empolyer what`s happened. Hopefully he will be understanding.

I hope the current relapse leaves you soon.

luv Pollx

My initial letter did say “likely MS” after a spinal MRI was referred to him and he did a physical exam… During my next appointment (after my head MRI) he said “likely primary progressive” so I immediately asked if it was definitely MS and he said undoubtably, just the type isn’t certain… see you in 12 months!

I didn’t need a LP either but I think they do word things a bit vaguely in their letters. I was initially referred as my spine MRI just showed loads of white dashes and the brain one showed a whopper so I guess quite clear.

You did the right thing telling DVLA.I didn’t think you actually had to tell your employer tho.

Speak to your MS nurse if you ave queries, they are fab help :slight_smile:

Sonia x

Thanks Poll and Sonia.

I only told my employer as it was down to an insurance issue and they needed to know because of that. One thing my employer said was that due to the diagnosis I was covered under a critical illness policy, which they suggested I put a claim in for. Now I guess that I can’t claim as part of the criteria requires a definitive diagnossis of MS. I only have three months from diagnosis to make the claim, so i guess that as this is only “likely MS” then its not a definitive diagnosis.

Unless Likely means “Yes but no, not really”… again

during my first appt with a Nuero he said to me I had MS symptoms and used the wording probable MS. I was at the time not expecting this so I waited for the letter to get to the doctors before speaking to anybody, when it arrived I rang the surgery and the receptionist said it said probable MS. So I told work and family.

A few months later I needed a copies of this letter for work and when it arrived it said nothing of probable MS.

thats when I started my journey of looking into everything further, and I still feel no wiser.

not sure if above helps you other than you are not on your own.


Hi, I wonder,have you had only one attack? I think probable and definite MS was terminology in older diagnostic criteria. Now, with the McDonald criteria, CIS and MS. So I wonder if they are almost sure it is an MS type attack (demyelation) but there isn’t evidence of multiple attacks separated by time and space. The nurses should be able to find out.

Hi Vithfari

Well the neurologist has only gone on the one attack because that is the only one which he thinks is MS related I guess. I did report that a few years ago I had issues when using the loo which he suggested may have been related, but wanted a timescale to put on the record.

The problem is that all of the other issues which I think is MS related has either been snubbed or dismissed or not reported as I have not seen the MS nurses yet to talk to them. I’m an bloke too! we don’t like talking about health issues (well not that much) to others.

Currently I have really stiff muscles in my right leg which has been like this for about 5 weeks now. The neuro instantly dismissed this as soon as I told him, I thought it was a new sympton as I have never suffered from this before. Muscle tightness in my neck and a pain between the shoulder blades in my back, which I think is the MS hug as it slowly creeps around my body, sometimes making me a little breathless.

Also last week, I had a two day headache, which duing day one, the pain was in my forehead which felt as though my left eye was trying to be ripped out from its socket, which lased for about twenty minutes. I’ve felt some pretty bad pain before, but this was really excrutiating. I honestly thought that I was having a brain heamorage (sp).

I think that I am going to phone the nurses next week if I haven’t heard from them and arrange an appointment to see them. I don’t want to take up any of their time and prevent anyone with a major relpase from getting attention though and be told that it’s not MS related. All throughout this last five months, I feel as though every time I mention something new to my doctor/ neuro they instantly dismiss the symptom and I feel like a hypochondriac.

hi Number08, my situation is quite similar - MRI showing lots of typical MS-like lesions and positive LP, but I had only one attack (apart from that I had terrible problems with balance a few years ago, but it’s impossible to say what was the reason for it). In a letter it’s described as McDonald MS, however, it’s still not definite MS. Actually, I think such attitude is reasonable… It’s a bit weird because, in my case, almost everything is typical for MS, apart from one thing - I’ve been feeling quite well since that episode. There are some bad days, of course, but still I have nothing to complain about.

I’m really sorry that your neuro is dismissing you. I hope nurses will help you.


Hi Number08

Could you contact your neurolgist’s secretary? Explain you have the opportunity to claim Critical Illness within a short timeframe, if you have a clear diagnosis. You don’t want to miss out on a critical illness claim, IF this is your only opportunity, and you have to get it in within 3 months! If they won’t give you a definative diagnosis right now, then OK, when/if they do, you can claim then, but please don’t miss out because of crossed wires or lack of communication!

Good luck! x

Ditto what Hunny says, if there’s a timeframe than claim!

Sonia x

Thanks Hunny, Alex and Nindancer, I would put the claim in but I fear that it will be rejected as my neuro report states “likely MS” and not confirmed MS. The policy states that to cliam I require a “confirmed diagnosis of MS with three months of continuing impairment” or something like that.

Also at the moment, my employer seems a little apprehensive about my diagnosis (i’ve told them I have been diagnosed fully) they have been OK about this, but things have changed with regards to my current role, which is being looked down on by others. If I put the critical illness claim in and it gets rejected due to not being fully diagnosed, then I fear that my cards could be on the table or I will be moved into another role doing something else.

I don’t understand why my neuro told me that I had to tell the DVLA and my employer (I had to tell my employer because of insurance reasons) that I had likely MS. I would rather of kept it quiet.

Its like telling them I have had “Likely brain hemorage” after having a migrane or headache.

Well at least the claim is in so you shouldn’t miss out because of your timing. If they don’t pay out now because it is not definitive then I guess the claim process has to start again if it is made definite (Lets hope not [no more symptoms]).

I don’t understand why your neuro told you to tell the DVLA. They will write to him about the DX anyway.

I understand you preferring not to tell employers.

It all seems a bit of a mess.

I hope it gets cleared up.

Speak to his secretary at least… it would be awful to miss out! x

Hi everyone

I’m updating this post as a reference for me to look back on and see what a mess this whole fiasco has turned out to be. Apologies if you read this and get confused.

Saw the neuro yesterday for my second appointment with him after my numb arm event back last July. I sat down with him and he asked how I was, to which I replied ok and ran through a list of “funny” moments which I have whitnessed with my body over the last six months. The list mentioned the things which lasted for more than 24 hours and which I thought might have been possibly to do with my investigation(MS).

I mentioned the bad bowel issue a couple of months ago, where I was unable to eat anything because I couldn’t go to the loo. I mentioned my right leg, which is still stiff, painful and at times numb. I mentioned the issue with my eye, where my vision did go blurred and I had a really intense pain which was really unbearble. All of the above apparantly are nothing to do with MS at all, all of the events were dismissed by the neuro. I didn’t bother mentioning any of the other symptons as I think he thought I was a hypochondriac.

He said that any future relapses would be where, like my previous episode and I lost the feeling completley in my arm, then if another limb or my arm again were to lose functionality for a period of over 24 hours then that would be taken seriously as a relapse. (OK something to look forward to, not)

He did say that if he were a betting man, then he would put money on me being diagnosed with MS in the not to distant future. I asked him if it looked like MS and he said very much so, however, time would tell and my treatment towards it wouldn’t change. (well it better do, because I don’t have any treatment towards it!) I asked if he felt it was RRMS or more of an aggressive form and he said very much RRMS. (sort of felt relieved by that comment)

He would like me to have a lumbar puncture within the next six weeks to see if this comes back positive for MS.

I asked him if the LP came back positivie, would I qualify for DMD’s and he said that I would, however, he would need to try to sort out funding, and also there are risks related to taking tsybari ??? He then said that an oral version has been approved by nice but it is not available yet, it possibly will be available in a couple of months time for when I need to start taking it??? (I think he doesn’t want me to start injecting any treatments)

So that was that, might as well had had the converstion over the telephone with him and I guess I must remember that a relapse will be pretty major and not any of the things i had put down to be MS related recently.