CIS?

New diagnosis and before diagnosis
1

I have been thinking lately (I’m always thinking lately!). So I had a bad episode in March (my first/only one) that got worse to the point that I could not walk, wash, cook, clean etc. Kids were living out of tin cans and I was hobbling around for weeks with a stick and an eye patch. Emergency neuro appointment where she highly suspected MS due to my sudden onset of symptoms. Did a few tests, found my left side (the side all my symptoms were on) to be weaker. Sent for an MRI which showed one small lesion on right side of the brain in brainstem area which would explain, exactly, my left-sided symptoms. Neuro said she would send me for a LP and VEP’s to add weight to a DX of MS.

So had LP and VEP and have a follow-up appointment next month.

What I want to know, or be prepared for, is what happens next?

I am the sort of person who needs to be prepared. I like to read. I read as much as I can.

If the LP shows elavated proteins or bands or whatever it is that people with MS have, that shows up on a LP test, will that then be a DX of MS? Or will it be classed as a CIS? If all this is being done to add weight to a DX then I don’t see the point. I think I should not bother and just wait and see if I have a relapse.

If the only way to be sure it is MS is for me to relapse then why all the tests? Why not just wait?

If LP is positive for MS and VEP’s show something also (and I get a DX of MS) will I then need to think about drugs or is it, again, a case of waiting for a relapse?

It might be another ten years before I relapse again! …if at all.

I think what worries me is that, although I have recovered well, without the need for drugs, I am still not fully recovered. I got to about 90% recovered and then stopped. Some days I would say I even regress a bit and go back to about 75% recovered because some days my legs (especially left) feel very stiff and tight and weak. Some days I feel exhausted mowing the lawn when I can usually do that and more no problem. Some days I sleep for about 12 hours! Some days I feel double my age.

I still have pins and needles and slight numbness in fingertips and toes on left side. Usually worse in evenings.

I am not back to my normal self and wondered if I will? Is there a time limit for recovery? It’s been over 3 months now since my first episode. I recovered mostly in 8 weeks but residual symptoms still remain.

I have no new symptoms, but the old ones sometimes return or are aggrivated by doing normal stuff like gardening and shopping etc.

Is there anyone here who has had a CIS with a positive MRI, VEP and LP but no DX and no meds?

What do you do??? Surely you can’t get that far, with the tests, and then sit and wait?

It’s mental cruelty!

If I had one episode and no lesion and no bands found from LP then I would be happy to carry on with my life thinking it was a one-off. It’s just knowing that I do have a lesion and waiting for LP results is like waiting to find out if you have been given your old life back or not.

Just, how do you cope?

If my LP and VEP’s are normal what then?

Why did one small lesion cause so much disability in those few weeks? Some people have loads of lesions yet very mild symptoms. I don’t understand it all.

Could the lesion have been caused by smoking or from a migraine attack instead?

I think I need to write all of this down and bombard my neuro at my next appointment and take notes of her answers!

2

Flippin’ 'eck! Where to start! LOL! I’m not going to get all of the questions, but I’ll do what I can…

It might be helpful for you to read the Polman et al (2011) Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria. It’s free to download and reasonably user-friendly.

Basically, you will not be able to be diagnosed with MS because you have only had the one attack, and you recovered well from it (so it’s not progressive MS). So the diagnostic options are CIS (clinically isolated syndrome) or probable MS. These are both proper diagnoses. To be given a diagnosis of probable MS, you are supposed to have either more than one attack, but only one lesion, or one attack, but more than one lesion. At the moment, you have one of each, which makes a diagnosis of CIS the most likely outcome. This is going by the book mind you - neuros can do whatever they like as long as they are wholly confident that they are right.

The chances of developing full MS depends on a number of factors. Things that increase the risk are a positive LP, lesion(s) on initial MRI, level of recovery, position of lesions if any. I can’t actually remember the positions properly - I know it includes the cerebellum, but I can’t remember if it also includes the brain stem, sorry. But, ultimately, it is not 100% for anyone.

As far as drugs goes, in the UK you cannot get DMDs unless you have a dx of MS and have had two relapses in two years. However, some DMDs are licensed for use in CIS in the UK. This comes from Eurpoean approval because DMDs significantly reduce the conversion of CIS to MS. Unfortunately, NICE have not approved them (yet) so it would be a matter of fighting your PCT to get them to fund one for you.

How long recovery takes is the old length of string question I’m afraid. 3 months is certainly not the limit though - some people find that they are still improving 12 or even 18 months after a nasty relapse. You may well find that one day you wake up and realise that, actually, you feel better! (It’s a lovely moment!)

Could the lesion be caused by smoking or migraine? Both of these things can cause lesions that are visible on MRI, but they are found higher up (as far as I know). Also, lesions from smoking and migraine wouldn’t (again, as far as I know) cause such a sudden onset of symptoms which last for many weeks.

How can one small lesion cause such carnage? It’s all about location. The brain stem is a crucial part of the nervous system. It contains the cranial nerves, all spinal signals go through it and all signals from the higher brain to the spinal cord go through it. It’s important for fundamental functions like sleep and breathing and swallowing. In other words - it’s a bad place to get a lesion. In contrast, lesions in the higher areas of the brain are much less likely to cause the same level of damage. It’s a bit like a needle in a tiny pile of hay versus a needle in a haystack.

How to cope with a diagnosis of CIS? Or probable MS? My personal view is that you get fit, eat healthily, stop smoking, take a hefty vitamin D3 supplement, and try and forget all about it! There is no point in worrying about something that might never happen; it’s an utter waste of energy. Most of all, live life to the full.

Hth!

Karen x

3

It’s confusing isn’t it!!!

I got my dx in March 22nd a month after a poitive LP…my MRI showed not brain lesions and only inflamation to the spine[at the time the neuro told me it was strong indicator of MS]

I had my first worsening of symtoms in November which took me approximatly 2 months to fully recover from my eyes didn’t settle down fully until April .

At my dx appointment my neuro told me that because I only have one relapse on my records i wouldn’t be able to start dmds as the rules are 2 relapses in 2 years before you are cosidered to be eligable.

One thing that is worth remembering is that no two cases are ever the same; so we’re all effected differently.

I know this isn’t giving you an answer to all of your questions but I thought may be telling you my experiences will help you undersatnd what may happen next.

I*'m just waiting for Ms nurse appoinment now which has been moved twice.*

I hope some more experienced MS’ers will be able to give you a few more answers.

Good Luck and try not to worry.

Libby

4

Karen has really said it all, all I can add is that at least here you can get answers to your questions and a huge cyber army to lean on.

As to the always thinking, why not switch off for a while and focus your energies on enjoying your kids and what you can control…I know its easier said than done.

Even if you were sticking needles in yourself daily would you really be in control or just taming your MonSter?

I find that each relapse now always leaves some residual problems,but they tend to become your norm after a while so you notice them less.

What is it that scares you the most out of all of this?

Pip

5

Wow, thanks so much for all your replies. It actually gives me a bit of relief just sounding out my worries - even though they are mainly still there.

Karen, I know! So many questions, LOL! Once I start it all just comes pouring out, unstoppable. Thanks so much for your time. I feel less stressed when things are explained clearly. Will take a look at the revised diagnostic criteria for MS. I think I may have already had a look at that but will take another look.

So, it sucks that the lesion I have is in my brainstem, that is so typical. I always get the rough end of the deal, lol. I can never do anything ‘mildly’.

Is it likely that, if I do have a relapse and more lesions, that they will again be in the brainstem? Or more likely to be in a different place/part of brain? What I mean is, does lightning strike the same place twice? (sorry, more questions again!).

I don’t smoke now but have smoked for most of my lfe. Am now 40 and have given up about 18 months now. Not going to start again now this has happened, too scared to!

I’ve also read that starting DMDs early after a CIS can help prevent it moving on to MS. Wish I had the money to buy them!

I have just started taking 40,000IU D3 and have also ordered some (but not as high dose) for the kids. I take regular exercise (less since March but am not stopping altogether) and, apart from massive doses of chocolate, I eat pretty healthy. I rarely drink alcohol. Hopefully I am helping myself by trying to keep fit and healthy.

Thanks Lib67, your message has helped. Have you had more than one MS attack, that you know of? Worry, yes, hmm , am trying not to OVERLY worry but I do often sit thinking about, well, thinking about so many things really. I am a thinker and like to know what’s ahead… or might possibly be ahead and I do think it actually helps me. It’s the NOT knowing that scares me. I think I can cope, as long as I am somewhat prepared. Even if notthing ever comes of it. It’s a degree of control, for me, I guess.

Pip - A huge cyber army to lean on - made me smile. That was a great line! :smiley:

I think what scares me most about all of this is being disabled and needing someone to help me. Maybe it’s just the ‘needing someone’ bit that sits ill with me the most. I have pretty much always coped with stuff alone. I have all too often taken on the caring role within my family from a young age with my; much younger (13 years younger) autistic brother, my much younger sister (14 years younger), my schizophrenic step-dad, my nutcase mother, my bi-polar husband and my ADHD son.

I don’t know how to be cared for. It’s alien to me and terrifies me.

I think parlty it is to do with the control element. When I am in charge and doing the caring I am in control. If I am ill and need caring for I don’t like it and i don’t cope with it well. I shut myself away and close off. I think it probably goes deeper than that even!

6

I have just looked at my vitD bottle because the strength didn’t quite sound right to me and I got it completely wrong. I am not taking 40,000IU!.. but 5,000IU. One a day. I have no idea where I got that figure from.

7

I think [and my GP agrees] that I has another relapse about 6 weeks agol which was shorter with less symtoms but more intense

My neuro had told me that he wouldn’t be seeing me again for 12 months and I’m still waiting to see an MS nurse but I have an appointment now for July when I’m hoping to get her/him to speak to my GP to confirm the last relapse so I can start dmd’s.

At the moment I take Baclofen, Lactulose, Isphalga Husk, Tumeric and as you Vit D the only problem I have is I can’t swallow tablets so I have the kids chewy versions so the dose is probably wrong.

I can see what you mean about being more scared of the unknown I hope you get some answers soon.

Libby

8

Thanks Libby.

How is a relapse confirmed? Do you need another MRI to see if there are more lesions?

Do lesions ever go away/disappear?

Ah, Lactulose, my son (the one with ADHD) took this for some time but it didn’t work for him, he then went on to Movicol which works to a degree. The poor kid has so many labels and takes 10 tablets a day!

9

Re new lesions: if it’s MS, then most likely to be in an MS typical area, but they could be anywhere. Most MS lesions don’t actually cause symptoms (“clinically silent”) - so you never know, you might get lucky!

Kx

10

Still think it’s confusing…! I don’t know the answer to the another MRI to confirm a relapse it was one of the questions for the MS nurse in July. Particularly with me not having any last time…last MRI was last October. I’ll update you afterwards…buy may be/hopefully you’ll have got some answers of your own by then. Just laughed read my post back and I’d put January instead of July…that would take waiting for an NHS appointment to new levels!!! Libby x

11

I hope, if I do have a relapse, that it is somewhere else in the brain then. Less severe symptoms would be nice.

Libby, I am always getting dates wrong. I actually cancelled my next neuro appt which was for a follow-up to discuss my LP and VEP results. I thought they had made a mistake and given me the appointment before the LP/VEP which would make no sense at all. They phoned me back, thankfully, and told me the neuro follow-up appointment was for end of July so they didn’t cancel it. So glad someone was on the ball!

I’ve probably already said this but can’t remember.

I repeat myself so much…and I repeat myself so much :wink: