Last reply 7 months ago
Did you have DMDs at CIS stage?

Hi everyone,

I have recently been diagnosed with CIS at age 30. Quite a lot to take in…. I have seen one of the top neurologists in the North West UK but he was very flippant about the diagnosis and the possibility of another attack within 2 years. He also wasn’t prepared to offer DMTs but sent me off into the world with the advice to get on with things and take some vitamin D. I couldn’t take too much in during the appointment, so I am thinking about going back for a bit more discussion…and his reasoning on no DMTs as everything I have read suggests the earlier treatment begins the better.

My question is, for those who had a CIS stage did you start DMDs?

Any advice on how to approach trying to move forward ? I really feel I don’t know who to turn to to discuss this and the options if any that are available.

Thank you,

Casey

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
7 months ago

Hi @caseyxo , here are some details about CIS and the rationale behind whether to start on DMTs, or not :-

https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis


californiadreamin
7 months ago

@caseyxo Yes my wife was technicaly CIS when diagnosed at the end of 2016. She had MRI’s and the mri’s showed she has lesions in both time and space (spine/brain). This was enough to conclude that even though she was CIS she could begin treatment. (We are in the US by the way). Today, that would be enough to declare that MS based on the new standards.

Starting treatment early as possible will most likely improve your long term outcomes. What did your MRI show? If you havent had one, it might be a very important data point on your next steps.

Regardless I would suggest there is a lot of hope for MS patients today. Consider a lifestyle modification to improve your long terms prognosis regardless. I think in the UK you can get a copy of Overcoming Multiple sclerosis for free, but we ordered it from Amazon. It is very encouraging and full of hope (after you get through the first chapter). You can also go to that website first if you want to take a look:
https://overcomingms.org/ Keep in mind there are other options besides that program, but I think regardless its a good starting point to start learning about things.

In terms of options, there is much very reliable scientific information available. The key is to make sure you know what you are reading/watching. But I would strongly recommend learning a bit about it first by getting a copy of that book. Even in the last two years science had advanced and you have even more options available today. Once you do something like that, you will be a more informed person and will be in a better place to evaluate options.


caseyxo
7 months ago

Hi both

Thank you for your comments.

Yes had several mris, first a lower back which showed a lesion in my lower spine. Then a brain mri which showed a small number of lesions, I have also had a neck which I am waiting for a second opinion on.

They have been done at different times but only by a few weeks so the consultant hasn’t got any proof over time just space.

I had zero symptoms prior to my first cis attack in January, and never had an mri before for comparison.

Thank you for the advice regarding overcoming ms I will look into this.

Whilst I naturally don’t want ms, I am sure no one does, but if that’s the future the earlier I can get treatments the better. Just need to find a neuro who believes this as well,

Thanks,

Casey


lauren-lee
7 months ago

hi Casey.
I was diagnosed in Jan this year with CIS. I also had no symptoms at all until a major attack causing severe vertigo. MRI scan showed 3 lesions in spine and multiple small lesions in my brain and a large one in my cerebellum. I was also told there was no rush for dmt’s by the first Neuro I saw at Salford royal but the second Neuro I saw wanted me to start on them immediately. I think each Neuro is different but you can always ask for a second opinion. if you don’t ask you don’t get!
great advice about learning what MS is. this way you can form better questions for your Neuro. any questions please feel free to ask its a scary place being newly diagnosed x


caseyxo
7 months ago

Thank you Lauren-lee, I have also been in and out of Salford Royal. Should be back again in a few weeks….

Did you make the decision to go on treatment ? If so which?

Thanks,

Casey


aabreu
7 months ago

I’m very sorry you have this. Be great full you have social support media like this and are getting this now and not 20 years ago.
I am in the camp that thinks there is only one disease called Multiple Sclerosis. All these other names are smoke and mirrors in my opinion. Getting the wrong name could mean the difference between receiving and not receiving effective treatments. Most drugs are for the relapse remitting type. Everyone else is out of luck.

If you have spots on your spin, I don’t really understand what the doctor is talking about. What is he waiting for? You in a wheelchair?

The biggest mistake I made was not having a regular doctor. If I did, I could have described my problems and maybe had some steroids to help during my confusing relapses.

The second mistake: not having a neuro willing to aggressively treat my disease.

I would find a neurologist that is a bonified expert or specialist in MS. There are research universities for example. I went to university of Michigan in Ann Arbor on Thursday. Very impressed. Truly energetic and open minded and young doctors there.
For you in UK, there is Bart’s. I go to their website daily. I’m a Dr. Gavin Giovanonni fan. I don’t know how it works in UK, but I would make some unladylike noise to see him.

God speed


kinga
7 months ago

I’m CIS since October 2016 – one lesion that has almost gone now. MRI every 6 months. No DMTs. Read OMS diet book


maureena
7 months ago

I have been diagnosed cis since 2015 after suffering ON with leg weakness and sensory problems . I have previously had TN but no mri at time.
I had positive brain mri over 20 lesions and positive lumbur puncture and have had ongoing issues with leg weakness, pain and periods of worsening pins and needles arm and leg pain. Have not been offered dmt as no changes on mri. Recently had spine mri which showed one lesion but can’t be dated.
It is very difficult dealing with no definate
Diagnosis. I am seeing Neuro end of month so shall see if his thoughts have changed now criteria has.


lauren-lee
7 months ago

hi sorry for the late reply. I am seeing my neurologist tomorrow morning. she sent me a list of all the different drugs and it is mind blowing. I am supposed to have my answer for her tomorrow but I am torn between mavenclad and lemtrada. I just don’t want to make the wrong decision. never know we may bump into each other at Salford some time. it’s a small world!


californiadreamin
7 months ago

@lauren-lee what are you trade offs for deciding between the two and what did you doctor suggest? If I had to choose mavenclad would be my choice just because of the convience and because of the secondary auto immune issues with lemtrada. I would be curious to know the reasons to choose lemtrada. Concerned on the newness of mavenclad?


lauren-lee
7 months ago

@californiadreamin my doctor didn’t suggest any particular drug. it was my choice to choose she could only talk to me about my options. so I have decided to go for mavenclad over lemtrada for now. hope I haven’t made the wrong choice. I was very concerned about the further auto immune diseases with lemtrada and other major risks of renal failure. I just wish there was more data on mavenclad and I think I would prefer it as injectable rather than tablet so then it is 100% bioavailable. what medication are you on?


bernadette
7 months ago

I had CIS following optic neuritis in spring 2016, I also had walking/balance problems and foggy brain, fatigue, as well as other MS symptoms the Neurologist advised me to start DMDs because ‘you have a LOT of brain lesions’ – his emphasis.
The drugs have side effects though, I’ve been on Copaxone and am now on Techfidera, if I did not have MS symptoms I would have been reluctant to take either. I have little idea of how much of my feeling grotty is to do with the drug. The neurologist still considers my diagnosis to be CIS which I find hard to grasp during the times when feeling most unwell, but hey ho he is the expert.
I see another member has suggested OMS, I would recommend it too as offering positive suggestions with managing the whole thing whatever the heck you call it.
keep on keeping on
x

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.