gingeral 26/03/17
Last reply 11 months ago
Getting a diagnosis

Getting a diagnosis

Hey I’ve had an MRI scan which has shown lesions, my primary symptom was double vision as well as other strange tingling sensations etc.

The doc has said I have clinically isolated syndrome and that she is almost certain that it will come back and be MS. I’ve had a lumbar puncture and VEPs a month ago and heard nothing back which I assume means they are clear but I am trying to chase.

My symptoms have settled down and I feel back to normal, I don’t know whether to think I have MS or not.

How long do people usually take to get diagnosed? Has anyone ever had clinically isolated syndrome with lesions on the scan which hadn’t turned out to be MS?

Thank you ☺️

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stumbler
11 months ago

@gingeral , a diagnosis of MS must satisfy the McDonald criteria, https://www.mstrust.org.uk/a-z/mcdonald-criteria .

It really is a case of satisfying the “multiple” side of the “Multiple Sclerosis” condition. In your case, it is being looked at a singular event, hence the interim diagnosis of Clinically Isolated Syndrome (CIS).

This may, or may not, progress to MS. Some Neuros are adopting a proactive approach by prescribing a Disease Modifying Treatment (DMT) to try and prevent this progression.

This previous topic may be of interest:-

Is CIS a type of MS?


gingeral
11 months ago

Hey, thanks for the response. I totally get why they can’t diagnose it as yet but I was wondering how often CIS moves on to MS? The doctor said she’s 95% sure it will but I’m not so sure she should have said that


californiadreamin
11 months ago

So a couple questions. do you have an MRI with and without contrast? The contrast gives the ability to separate between what is happening now and what happened in the past. That means you can establish to some extent that something happened in the past and something is happening now. My wife would technically be CIS by certain non revised McDonald criteria. It would be good to know what makes the dr 95% sure since the typical conversion rate is closer to 50%. One indication would be where and how the legions are formed. Typically the “fingers” formation is more commonly seen in MS.

Neither here nor there, even if it was only 50% likely to convert you should consider what your best options are. Your situation isnt that much different then where my wife was 6 months ago. We opted to make large lifestyle changes (we are following the OMS protocol, overcomingms.org, but there are a number of others). There is evidence for vitamin d and I think in OMS Dr Jelinek shows good evidence that flaxseed oil can really prevent this from converting. (an example would be https://overcomingms.org/news-research/news/flaxseed-oil-associated-with-40-lower-risk-of-developing-ms/)

We started Tecfidera and decided to go more aggressive with in rather then waiting for the next attack. Our reasoning was that we would rather go aggressive with the MS and check the MRI’s over a couple years. If she continues to have attacks or develop legions then we would be glad we started the DMT. If she doesnt develop anything (however unlikely) then after a few years that diet would have changed some of our body to become more stable and we would consider tapering off the medication. The downside we thought would be taking the medication for a few years if it was possibly uneeded, but we thought it was worth the risk.


stumbler
11 months ago

@gingeral , the only predictable thing about MS is the unpredictability of it.

Live a healthy life, with a balanced diet. And, avoid stress, as this seems to provoke the brain to attack our Central Nervous System (CNS)………

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