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Does a diagnosis of probable MS mean I have MS???????

Hello,
I wonder if someone can help. 3 months ago I was diagnosed with clinically isolated syndrome. My MRI shows 8 lesions on my brain and spinal tap was positive for MS. Since then, Ive had several MS hugs, pins and needles, numbness, huge fatigue, and complete heat intolerance. My neuro diagnosed me with probable MS last week and prescribed meds for the neuropathic pain, assigned me a team of MS nurses and referred me for physio. he also said I should inform the DVLA and my university course that I have probable MS.

So what does this mean?? Do I have MS? do I just have to wait for a relapse until I have definite MS?
Really hope someone can help as my head is spinning.

thank you!

Hi :smiley:

I had a diagnosis of probable ms first, followed by a month later a diagnosis of ms. My neuro told me the reason for this was that he was awaiting results of blood tests and needed to rule out any other possible problems. Maybe your neuro is stil waiting for information before he gives you a final diagnosis. X

Hello, and welcome to the site :slight_smile:

There are two key criteria for the diagnosis of MS: dissemination in space (basically lesions in more than one typical MS location) and dissemination in time (more than one attack).

CIS = neither criteria met; half-way on both.
Probable MS = one criterion met, but the other one not. To change the diagnosis to full MS, the patient needs either another part of the nervous system to be affected or to have another attack (depending on which bit hadn’t happened yet).

Based on this, I am rather surprised at your CIS diagnosis. Someone with 8 lesions would normally be considered to have satisfied the dissemination in space criteria, unless perhaps they were all in the same area? OR perhaps that the neuro you are seeing is not using the most up to date McDonald criteria? What I am saying is that I think you should have been diagnosed as probable MS from day 1. BUT I am not a neuro and my qualifications are not in medicine.

The only way your change to probable MS makes sense is that your neuro now believes that your latest episode makes you satisfy the dissemination in time criteria, but that you still don’t satisfy the dissemination in space criteria. Tbh, I actually just don’t get that!

Is this neuro an MS specialist?

I guess the key thing is that you are getting access to help and meds. That’s good, and wouldn’t be all that different even if your diagnosis was MS already. The key difference is that you can’t get DMDs (disease modifying drugs) for probable MS in the UK. So getting an early diagnosis might get you earlier access to DMDs, which might help you keep your MS at bay a bit.

Do you have another appointment soon? Can you ask a few questions when you go?

  • “Exactly why is my diagnosis probable MS and not MS?” If the neuro doesn’t give you details, ask more specific things like, “What changes would need to be observable either on my MRI or in my clinical examination for you to agree that I satisfy the dissemination in space criteria for the diagnosis of MS?” and “You changed my diagnosis from CIS to probable MS. Why?” and “Would you consider that I have had more than one attack of demyelination?”
  • “Can you prescribe DMDs?” If the answer is no: “I appreciate all your help, but I would like you to refer me to someone who can please.” If the answer is yes: “I believe that research has shown that starting early on DMDs delays the onset of progression. I would like to start on them as soon as possible. Can you help?” [Of course, this assumes that you would want to start on DMDs and that your conversation with the neuro has revealed that you do actually meet the criteria for a diagnosis of MS. Re wanting DMDs, well, personally, I’d grab them with both hands and fight anyone to the death who tried to take them off me(!) if I could go back to the beginning and get them for myself, but not everyone shares my view.]

I would also take a copy of Polman et al: Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria. ANN NEUROL 2011;69:292–302. These are the new Gold Standard for diagnosing MS. They are free to download - just google it. Knowledge is power :slight_smile:

Hth.

Karen x

Hi!

Thank you for your detailed answer! \it was a different neuro I saw last week, the MS specialist. He couldnt be sure whether I had a CIS or a relapse. When I asked him outright if I had MS, he just said, ‘go on the assumption you do’ and ‘in all likelihood you do’. He said it was almost certain that I had it but he could not diagnose it for definite until I had a relapse, but ‘these are just words!’. Then he diagnosed me as probable MS!!! so got to wait another 12 months til I see him again and I have to call the MS nurse if I have a relapse.

However, my GP has said she’s convinved it’s MS and will treat me as such. Especially as I have had new and varied symptoms since the ‘CIS’, the MS hugs in particular.

Is this normal! x

Is it normal? Well, quite honestly, I reckon very little is normal in the world of neuros and MS!

I bet the fact you saw someone else the first time has caused this situation though in that perhaps the new guy’s assuming that your current symptoms are an extension of the original relapse rather than a new one or that they are not sufficiently separate to be able to know for sure? That’s the only way it makes any sense at all to me anyway.

The official definition of a relapse includes a line that says that the new symptoms have to start more than a month since the last relapse started - this is because relapses sometimes sort of cascade - they start with one thing, then a couple of weeks later another thing happens, then another, etc, etc. These kind of relapses can last a long time so your current symptoms could maybe be part of the first relapse, or at least appear that way to him.

The good news is that you are seeing an MS specialist now. He may be a bit on the indecisive side(!), but he should be able to get you all the help you need if and when you need it.

If you want to push for a diagnosis now, rather than wait for a relapse, then I suggest you enrol your GP. If your GP has seen two separate episodes with different symptoms and writes to tell the neuro that, then it’s possible that he might reconsider. The potential downside is that you challenge the guy who you are going to rely on from now on - which is not necessarily ideal. Perhaps your GP would be willing to take the fall for you? As in making it clear that it is her that is challenging the diagnosis, not you.

Remember that the only potential upside to getting the diagnosis now is to get access to DMDs - you are already getting everything else - and he may say no to that at the moment because your relapses may not be “two clinically significant attacks” in his eyes (hence the dragging of his feet on the diagnosis). So, it might be better to wait? (Although you could always ask your GP to ask for DMDs in her letter, if it gets sent - that might clarify things?)

The reason the neuro said that it was “only words” is that in his mind MS is a chronic condition so there’s no rush. He knows you’ve got MS, but he wants to tick all the boxes properly before confirming it. We are always in a bigger rush than the neuros - if it was them who actually had the symptoms, they would be too!

Karen x