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Wanted some advice after my (sort of) diagnosis

Hello all, I’m new to forum - nice to meet you all. I am 29 year old guy; I was recently in hospital for a week with optic neuritis. I had various investigations when I was an inpatient and the registar just called me to update me on the results. She said I had: - inflamation of the optic nerve - non active inflamation of the spinal cord - clean brain MRI - positive CSF test (i.e. oligobands) - negative TB test - negative NMO test Does anyone know what this means in terms of MS? I was a bit shocked during the phone call and did not ask outright if I had MS. I think she was reticent to break the news over the phone (maybe that is the consultant’s job?). Anyway, I have to wait until the 10th of June for my follow up appt and I didn’t want to start Googling, so thought I would post here. Thanks - also apologies if this is not a typical post for this forum.

Hi there

Ask away, you can look up on the NHS website they are alright but I think you will get better answers on this site we’re not doctors but many people can help with day to day stuff. And help with a lot of other problems. So you have made a good decision to come on here, no dr Google to upset you.

Kay

Hello! Cheers for your reply.

I had a look at the revised McDonald criteria and it seems to fit the bill… dissemination in space and time etc.

The only thing I am confused about is whether “inflammation” and “lesions” are the same thing.

The doctor said I have inflammation on the optic nerve and non-active inflammation (i.e. old inflammation) on the spinal cord. But is this the same as having a lesion? If not, then maybe I don’t fit the McDonald criteria.

Thanks!

Hello Declan

Welcome to the forum.

I sometimes think neurologists conspire to find new ways to essentially not give us plain and simple answers.

I’m not sure whether the ‘non active inflammation’ in your spinal cord equals lesions. You’d think so! But it’s possible that what you’ll end up with on 10th June is a CIS diagnosis. That and a ‘let’s wait and see what happens!’

Or, you might get a complete MS diagnosis. It certainly sounds like it’ll be one or the other… but then I’m not a *#@^¥ neurologist!

Kay is right to advise you to stay away from random googling. That way, you’ll end up with a diagnosis of galloping plague at the very least.

Information about MS is best taken from this site (the About MS tab at the top), or the MS Trust - they have brilliant information pages. The best way to access these is probably type in a word about which you want answers and MS Trust.

In the meantime, why not get acquainted better with disease modifying drugs (DMDs). Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

Also, if you’ve not done so previously, try writing a diary or timeline of the symptoms you’ve had over time that could be tied to an MS diagnosis. When you get to your Consultants appointment, you’ll then have a load of information ready at your fingertips.

Best of luck.

Sue

I’m waiting for a proper diagnosis after seeing my neurologist on Tuesday and him vaguely referring to me having CIS and referring me to a specialist MS team. He describes my lesions as inflammation. I know they they are lesions as I have a copy of the actual MRI report. Hope you get some answers soon

Cheers,

I’ll have a look at that link. The doctor actually mentioned DMDs over the phone, but I didn’t know what she meant at the time!

Does what I say to the doctor actually have an impact on my diagnosis then? I assumed it was all down to MRIs and other tests.

Actually, thinking about it over the last day, I had what I think was an attack around two years ago. I can mention it to the consultant during the appt, but she asked me about previous symptoms when I was in hospital (i.e, dizziness, leg pain, pins and needles) and I said had never experienced them. Don’t know why I said that as I had experienced a lot of what she was mentioning - I think I just thought it was so long ago that it wasn’t relevant. Hope that doesn’t slow things up for me in terms of diagnosis and treatment!

Hello Declan

Some of what you tell the neurologist definitely has a bearing on your eventual diagnosis. And some of it is about what they can see on the clinical evidence, especially MRI scans. They can tell whether a scar or lesion is old or new. Once they have more than one scan to refer to it makes things somewhat easier generally.

Your experience of not saying when you’ve previously had episodes of different symptoms, is an excellent example of why a diary/rough timeline of what’s happened and when is important.

Neurologists seem to enjoy confusing things for us. Inflammation or lesion or scar or plaque or ??? As far as I can tell, often all relate to the same thing!

Betsy, if you have multiple lesions, I imagine that means they are in different places? Are they from different relapses? Or can they been demonstrated (ie by a neurologist) to be of different ages? If so, that’s not CIS, it shows dissemination in space and time, thus is MS according to the McDonald Criteria. See https://www.mstrust.org.uk/a-z/mcdonald-criteria

Sue

Just to add to this is that a positive LP can be used for the dissemination in time on McD criteria. That’s how I was diagnosed as MRI showed dissemination in space but not time. Yours might too as optic nerve and spine = dissemination in space and OCBs = dissemination in time.

Like Sue suggested it might be worth researching DMTs though you might not get a totally free choice. If you are diagnosed, you’ll generally be offered another appointment to discuss these further.

Thanks, I agree with this. I originally thought if my brain was clear that I couldn’t have MS, but after reading the McDonald criteria, this isn’t true at all. Brain/spine/optic nerve = the same thing.

I think I’ll want to use a more effective DMD if I am allowed to pick it!

I’m described as a low lesion load but am on ocrelizumab. Had Rebif for a year in 2017 but it lowered my white blood cells. MS Decisions Aid is useful to read.

Did you find the treatments worked for you?

Tbh I can’t really say about ocrelizumab as only started in April. But no change on my MRIs since the start in 2016 (haven’t had recent spine one though). If you’re on Facebook there are lots of closed groups there which are useful.

Oh sweet, could you link me up with some of these groups or tell me the names? I just got a appt letter through to see an MS team after my appt with the consultant so I think this may be regarding DMDs. Would be great to see what some real people say about how the DMDs work for them, reading papers dosn’t really give me much info!

Not a Facebook expert but if you search MS U.K. there’s one there that has over 4K members. If you search Ocrevus they’re mainly American but still useful info. There’s also lemtrada and tecfidera groups but the criteria for Lem has been tightened up so you may not be eligible. I was offered it but chose Ocrevus but wouldn’t have been able to have it in the end anyway.

If you’ve any questions, I’m no expert, but will give you my experience.

Yeah, I’m not sure what I’ll be offered really. I don’t think my MS is that aggressive, so maybe they’ll limit me to the lesser effective DMDs. Thanks for the info!

The current thinking is to hit MS hard rather than a step up approach. However, this depends on whether your MS is described as active. Also, what your neurologist’s views are. It’s still worth researching them all though as knowledge is power

Sorry to hijack the post OP Sue I have only had one MRI. I have no idea if the lesions are from different times as I have only one recorded attack of TN. But I have had episodes in the past which may have been attacks. I don’t know if my neurologist could tell if the lesions were different ages as he didn’t say but they are definitely in different places ie juxtacortical, periventricular, one in the cerebral peduncle and one in the left temporal strut amongst others. I’ve read the McDonald criteria a few hundred times and think from my interpretation that I meet both the space and time elements. So I will wait and see what the MS neurologist say when I see them.

Got diagnosed with RRMS – being put on Ocrevus.

Hi Declan

I hope you’re feeling OK about the diagnosis. I guess you’ve pretty much been expecting it. But don’t anticipate just saying ‘oh yeah it’s MS’ and wrapping your head around it instantly. Most people find their emotions go through a whole load of different states, from ‘oh sh*t it’s MS’, to ‘what the hell happens now’, and on to a certain amount of ‘why me, it’s just not fair’!

Ocrevus definitely looks like a good choice for a DMD. You might find a lot of users stories on https://shift.ms/ hopefully that will at least give you an idea about what’s likely to happen.

Best of luck with the drug. Let us know if you need any information or help. Hopefully you’ll continue to use the forum. More stories of people’s experiences on Ocrevus are very useful for others.

Sue

How do you feel about that? It’s good they have already offered treatment.