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Probable MS

Hi all,

Went to see my neurologist the other day who informed me that I had probable MS. He is classifying it as probable as there have been no changes to my mri and no evidence came back on my lumbar puncture. I have been introduced to my MS nurse, have been advised to contact DVLA, insurance companies etc and have been offered a wheelchair.

As stupid as it is I still feel like im in limbo land with the “probable” diagnoses - seems contradictory when it appears that I am being treated as having MS. Has anyone else been in this situation? I am not criticising in anyway as my neurologist is amazing and is head of research of MS for our local health board so he nows his stuff, I think its just me trying to get my head round all of this. Struggling a bit TBH.

Thank you in advance for any responses :slight_smile:

Hi Helen

I suggest that you see your GP to get their help in trying to get a clearer picture of what the neurologist is saying. No evidence on the lumbar puncture presumably means you don’t have oligoclonal bands in your cerebrospinal fluid. And 5% of people with MS are negative for O bands, which is perhaps why he hasn’t made a definitive diagnosis. Also no changes to MRI, I imagine that means you’ve had more than one?

To get an MS diagnosis, the neuro is likely to be following the McDonald Criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria This means that fairly strict criteria are followed, which you can see on the MS Trust webpage. Generally it’s having two or more lesions on MRI separated by time and space or at least two relapses and at least one lesion. While for progressive MS, it’s a positive LP plus progression over a period of 12 months in addition to MRI data.

So I suspect that while you have a negative LP, the neurologist perhaps doesn’t have the clinical data to support a diagnosis. But is fairly confident that you do in fact have MS based on your history plus neurological exam and MRI data.

I’m sorry if this all appears a bit negative, but judging from what you have said, there’s little more to suggest apart from talking to your GP. At some point your neurologist will send a letter to your GP detailing his findings and recommendations and you will receive a copy of that letter in the post. One thing you could perhaps do is phone the neuros secretary and ask if the letter has been written yet. In my experience, weeks or even months can go by before the letter is produced, sometimes it will state the date the letter was dictated (often very soon after the appointment) and the date it was typed (weeks later). So it might be that you hurry up the typing of the letter by phoning and talking sweetly to the secretary!

Sue

Hi both,

There was evidence of demyelination in my mri done 7 months ago but I had a follow up scan in August and there were no changes - i think had there been changes then he may have been able to do the full classification. He wants me to have another scan in a years time to see if there any additional lessions - I had two previously. Sadly I have had (what we now know) 2 episodes of which I ended up in hospital but I wasnt given a MRI - my last was done 15 years ago.

He said he is 100% sure it is MS hence the reason for treating me as such with the clinic appointments, my ms nurse etc but its just the evidence that seems to be lacking.

Im just finding it hard to try to get my head round it all. This has been going on for 7 years now and its been blamed on a multiple list of conditions from having a baby to sometimes we just get tired (one of my GPs!) From what I am seeing on here I am not unusual I just wish he had given me a yes or no :frowning:

Thank you for your replies, it means the world that you are happy to listen to my whinging! lol

Personally, I think its about time they told you if you have MS or not. Saying its probable is like saying if I do the Lottery on Saturday I might win and basically is telling you nothing. Yes, all I keep hearing is MS is difficult to diagnose but with technology today it could`nt be easier. If they were any good at their job you would have an answer by now.

As for advising yo to inform the DVLA. Well what a waste of time that could be. What if you don`t have MS?

Helen if sent you a pm

My wife is currently in a similar situation. started stumbling about a year ago, got some bad and wierd symptoms from march and ms started being mentioned by Dr. Had brain Mri in may,saw a neurologist about 6 weeks ago who examined her,talked to us about past episodes etc, viewed mri report and concluded that she had RRMS and no need for any further tests to confirm.He couldn’t see the actual mri scan as done at a different hospital and said he wanted to “see with his own eyes” but as far as we were concerned he gave a diagnosis. So this monday went for another appt expecting to talk more about DMT’s to find he has left,apparently they will view scans and discuss at their meeting wed(gone?),So we have a letter now stating “I agree with my colleague that the likely diagnosis is MS” or something like that. Feels like a real waste of 6 weeks, i felt totally deflated by this latest appointment must be 100 times worse for her!

Sorry, but new 1 on me ie probable It is or it isn’t

I would agree with you all - it either is or it isnt. But I can see from a legal(?) stand point that its difficult as from experience my neurologist is 100% sure but the clinical evidence doesnt completely confirm this. Hes treating me as if I do have it but id like to be able to be in a position in my own head to know that it is/isnt definitely MS.

Sorry starting to repeat myself now :frowning: thank you all so much for your thoughts and responses - its nice to talk to people who understand x

hi helen

has your neuro offered you a DMD (disease modifying drug) because that would confirm that you have ms.

that macdonald should have stuck with selling burgers!

hope you hear soon

carole x

Hi Carole,

No, no offer of DMD’s - he did offer medication for fatigue and he has given me stuff for my bladder but no DMD’s.

So does that mean I havent got it? I would agree about old McDonald!!!

Helen x

To get a DMD, the neurologist has his/her hands tied. Without evidence of relapses and / or lesions, they can’t justify a prescription for DMDs. It’s a sod, because being clear that it ‘probably’ is MS and as you seem to have had relapses with remission, being on a DMD would give you the chance of not having further relapses. It’s a catch22 situation, without relapses, the neuro can’t give you DMDs to prevent relapses.

So keeping a diary is vital. I use an app on my tablet / smart phone to record my health / symptoms. There are many about, some you can get for free (basic versions), I paid for mine and have been keeping it for about 6 years. In particular it helps with being able to check back what happened when (and my brain doesn’t always cooperate on the remembering side of things!).

But just as vital is keeping your neuro informed of symptoms and potential relapses. So having access to an MS nurse would be very beneficial, you can keep him/her appraised of what happens. And that way the neurologist could use such information as evidence for diagnosis and DMDs.

Sue

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Curious to know what was offered for fatigue and bladder.

Still trying to find a cure for both.

ok, since 2007, i had probable MS, and was treated with lots of respect by my neurologist and my doctor. However, my neuro told me without the right boxes being ticked they are not allowed to say you have MS. Its so upsetting, as it took 10 years to finally complete a puzzle. Mine was Positive VEP 2007 results positive bilateral slowing of brain and ON in between 2007 and 2015 I had many MRI and each one showed a lesion in a different place. Still no diagnosis. 2015 October another VEP test. The results were positive for another attack of ON and slowing of brain and ON. I saw my neuro on February 2016 for discussion and he finally told me with relief himself you have PPMS and i am sorry it has taken so long to give you a firmed diagnosis, BUT i was tied as we have strict guidelines. I get that, as there are so many diseases which mimic MS, but they dont usually follow the same testing results. As long as you are being treated as though it is MS and with respect you might have to be happy with it. I must admit i was treat with respect, my doctor sadly who has retired now, said when she finally read the diagnosis she let out a silent cheer lol. They knew it. When i was in hospital for a new disease called Transient Epileptic Amnesia, the doctor in 2015, said i would prefer your doctor who is dealing with your MS to actually get your prescription and EEG sorted out. Now i didnt know this neuro but obviously it was on my NOTES. So if he says probable then i think you can say it will be. The rules are the rules even to the detrimant of our health sadly, as i believe if i had been taken seriously in 2000 and not born in 1951 i would have been given a proper diagnosis and not left to suffer 2 major relapses which were put down to stress.

hi helen if you don’t mind me being blunt, your neuro has stated that he is sure you have ms. he can’t make a firm diagnosis though. so really the only thing that will change when you are diagnosed is the chance to start a DMD. and you may get an ms nurse. so use this time to come to terms with it. research the DMDs so that when you are asked on the spot which one you would like, you will have at least a vague idea. learn mindfulness meditation because it is excellent for calming yourself and it can also be used for pain management. it involves a lot of slow breathing out through your mouth. it works in childbirth so why not use it for ms pain. the course i did was called Breathworks. get to know your support network. if there is an ms therapy centre near you, go along. they are lively places and not a bit depressing. they are usually on the outskirts of a city. i go every tuesday for HBOT (hyper barric oxygen therapy) and lots of coffee, cake and gossip! believe me, life doesn’t end with ms, you just need to adapt to it. take care carole x