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Chances of ms after cis? Age. Vit D.

Hi all I’ve been away for a bit, trying not to dwell on all this. Now, after quite a long wait I now have the results of all the tests. The outcome is that everything else is ruled out, and I have had a CIS event - transverse myelitis I.e. All my lower body symptoms were caused by one spinal lesion. I know that the chances of getting a second attack - which would then mean MS - are hard to predict. I have one brain lesion. If it were zero then it would be 20% chance of a second attack. If I had many brain lesions,it would be a very high chance. 1 (small) lesion is a bit insignificant, but nonetheless the neuro said it did mean chances were prob a bit higher than 20%. What I didn’t ask, and I’m wondering if any of you have idea, is whether age plays a factor? Does the fact that I’m relatively old (42) to be first getting this mean it’s less likely to develop into ms? Also if it does develop, does the severity of attacks have any correlation with age?(either way?) Btw, I was also told to take vit d supplements in winter. Any advice about that? I assume much cheaper over the counter than on prescription - anything wrong with supermarket ones? Many thanks in advance for your always helpful advice and support! Clare

I too have one lesion (on my spine) and have been told that a second lesion developing would lead to a diagnosis of MS. I have been advised by my neuro that there is a 50% chance that one lesion on the brain and spine will lead to an MS diagnosis. However, this may just be in my case it is more likely to be MS, as my mother has MS.

Age does seem to be a factor and my mum was told that 40 years old is the cruch point?! If you develop MS before 40 it is more likely to be aggressive, unfortunately she was 39 at diagnosis and is now in a wheelchair. I am unsure how true this is as MS still seems to be such a unknown illness!! It does not look good for me if that is true as my first lesion appeared at 29! Looks better for you though, so stay positive :slight_smile:

I might look into to vitamin D as my mum is told to take them too…I might start taking multivitamins too as it cannot hurt?!

I really hope that you develop no further lesions and we can but hope…stay positive and try to enjoy the now!

L x

Hi, Have you had a lumbar puncture because if it is negative then your chances are much smaller than if it was positive.

Have you recovered well from the attack and has the lesion gone away yet.

I had an attack and recovered well then after a year later I started to get leg weakness and spasticity. the lesion on the spine was seen in 2011 and 2012 but gone in 2013. My walking is terrible and the neuros just cant explain things.

Moyna xxx

Hi. I have been diagnosed with transverse myelitus nearly two years ago, told to wait and see what happens. I was left with two lesions on my brain. My lumber puncture was negative so neuro told me that was the most important thing. He didn’t give me percentages. Teresa xxx

Thanks. Interesting… Yes I have made a very good recovery thankfully (though I know that is often the case with a first attack, ms or not). I haven’t had an LP as my neuro said it would not be definitive at this stage either way. I have been referred on to the ms specialist but not seeing them until I have another MRI after an ‘interval’ - no idea how long an interval! I know it’s just a wait and see really. Frustrating though that it may recur any time - casts a shadow.

I will say personally I didn’t find any benefits to taking vit d but I do know of people who have said that they felt it helped and hey any thing that makes this t@$ t of a health condition better/easyer to deal with has to be worth a shot. I used to buy the cheapest multivitamins that I could from tescos and from reading the labels they have just as much of every thing in them as the expensive ones. And as for relapses I try to approach with a its tough tits attitude so smile and get on and enjoy as and when I can.

Hi Clare

In terms of amount of vitamin D - my MS specialist as advised 5000 strength one a day (you can get 360 for 10.00 off amazon approx). Just be aware of the symptoms of vitamin D overdose though you don’t want to give yourself other issues but this is the standard advised for people with MS or ? MS. You may not notice any difference health wise on them but they’re taken as a precautionary measure as they have found links between them and MS.

Age - the older you are when your first episode happens the less agressive your MS is likely to be. Though the best way to know is actually by watching what happens over time as one perons MS will be very different to anothers. The fact you’ve had complete recovery also is good news too.

Personally I would get yourself on the vit D, see the MS specialist but go and enjoy your health and life. You may never have any new issues again and if you do you don’t want to think you wasted the time when you were feeling good. Enjoy keep fit, eat healthily.

Good luck.

Reemz

X

What is the difference between CIS and MS? Based upon clinical symptoms alone, CIS and MS appear the same. However, definite MS can be diagnosed only after occurrence of a second episode of MS-like symptoms (or magnetic resonance imaging (MRI) signs) that meet specific diagnostic criteria. It is not possible to predict with certainty if an individual with CIS will develop MS. Studies show that 85% of individuals with clinically definite MS initially had CIS. How is CIS diagnosed? Diagnosis of clinically isolated syndrome (CIS) is based mainly on clinical findings, including your reports of “invisible” symptoms. Your physician must also rule out other conditions that may mimic CIS . An MRI scan is performed to look for signs of inflammation and demyelination (i.e., lesions) in the CNS. What does a CIS mean for me? For many individuals, CIS predicts a second attack of symptoms that confirms the diagnosis of MS. This possibility is difficult to come to terms with. However, experts who treat MS believe CIS presents a valuable window of opportunity – the chance to set in motion the tests and imaging studies that can rule out or confirm MS sooner rather than later. Taking action is one way to manage the anxiety of waiting for a final diagnosis. An individual’s level of risk can be suggested based on findings of an MRI scan performed at the time of the CIS. Those with no lesions detected on MRI are at low risk of developing MS; risk increases with the number of lesions detected. Trials of CIS patients with two or more lesions on brain MRI (which were not causing symptoms) found that over the following 2 to 3 years, 45% to 50% of patients had a second attack (i.e. met the clinical criteria for MS). Regarding vitamin D it is adviced that you have an appropriate blood test and obtain the right type n dosage as soon as you’re in receipt of your results. I am currently on vitamin D3 1600iu per day for a year, blood’s repeated in 6 months. Best wishes x

Thanks very much. Can anyone help with the Vit D dosage? the tablets I have from the supermarket are 25 ug . How does that compare with 1600iu? or the 5000 Reemz mentioned? What do the unit abbreviations stand for and how do you convert from one to another? sounds like the ones I have are too low? The neuro just said I would be ok with not a very high dose - as my levels were low in January but fine in August so she just thought I should supplement over winter to be on the safe side - but she didn’t specify the dose and didn’t prescribe as obviously they are cheaper to buy than to pay prescription charges on (at low doses anyway)…

I have 2 brain lesions and have been diagnosed with CIS, but no one has bothered to tell me about my vit d levels so I don’t know what to take either.

Hi Clare & Puddinglover.

I was not told either about Vitamin D and as said in my post my levels was found incidently found on my regular blood screening tests. It would difficult for anyone to tell you how much or Vitamin D3 to take. It would be advised if you can at all, get a blood test for this only? once you know your levels you can obtain the appropriate dosage. Everyones levels are different, and too little would not be effective and to much Vitamin D can cause further health issues. Although I am on 1600iu per day for year (unless my next blood screen says other wise), other people are on less or more, dependent on their current levels. In CIS it is not hugley common to have low vitamin D, it tends to happen more so in M.S, but it’s worth getting checked every year, as precaution, if at all possible. As an example: I first came down chroninc approx 19 months ago and have never fully recovered, I have had numerous bloods, 9 months ago was all clear, and now my recent has highlighted the Vit D deficiency. I have never purchased Vitamin D3 from a chemist, so I can’t really help you with this, sorry. Do try not to worry and stress about, I know, easier said than done. Hope you get it resolved, best wishes guys xx

Hi Clare & Puddinglover.

I was not told either about Vitamin D and as said in my post my levels was found incidently found on my regular blood screening tests. It would difficult for anyone to tell you how much or Vitamin D3 to take. It would be advised if you can at all, get a blood test for this only? once you know your levels you can obtain the appropriate dosage. Everyones levels are different, and too little would not be effective and to much Vitamin D can cause further health issues. Although I am on 1600iu per day for year (unless my next blood screen says other wise), other people are on less or more, dependent on their current levels. In CIS it is not hugley common to have low vitamin D, it tends to happen more so in M.S, but it’s worth getting checked every year, as precaution, if at all possible. As an example: I first came down chroninc approx 19 months ago and have never fully recovered, I have had numerous bloods, 9 months ago was all clear, and now my recent has highlighted the Vit D deficiency. I have never purchased Vitamin D3 from a chemist, so I can’t really help you with this, sorry. Do try not to worry and stress about, I know, easier said than done. Hope you get it resolved, best wishes guys xx