CIS and wondering whether or not to start treatment

[Lili1924]

Hello everyone. I am a recent college graduate just about to start my journey into the world of work...and I was struck down by a clinically isolated incident. It happened a couple of months ago and I'm recovering very well apart from one or two remaining sensory issues. I will continue to attend appointments with my neurologist and get MRI scans for the foreseeable future. However....to treat or not to treat? My original brain MRI showed only one lesion with none coming up in the spinal cord. Evoked potential tests showed nothing unusual. My lumbar puncture came back positive. So again, to treat or not? I know that with just the one lesion I'm doing pretty well but the lumbar puncture worries me. I'm just about to start into my life as a grown up and I worry that, should the diagnosis be given in the future, I'll regret not having started treatment sooner. Any thoughts or similar experiences? Thanks!

[immisceo]

Thanks for keeping us in the loop! Delighted you're doing well with the Rebif and that life goes on.

[Corriel]

Hi there! I was dxd in April 2013 and started Rebif in July 2013.

Glad to hear you are doing well and that there is someone else on Rebif.

Corrie

[Lili1924]

Just a quick update: I was diagnosed with MS in July 2013 and have been on Rebif since about August. There was no subsequent exacerbation but an MRI last summer showed another two lesions. I have to go for another MRI this summer and will be seeing my neurologist again in Oct (having just seen her last month).

All in all, I'm doing pretty well. Residual tingling/tongue pain, but I'm used to that by now! No issues with the Rebif. I'm working full-time as an occupational therapist in a busy hospital so I'm keeping myself busy! Just wanted to drop in and thank everyone again who was so kind and supportive when I originally posted.

[debgen]

Hi and welcome to our forum where you will realize that you are not alone in this journey :)

I had my fist attack 30 years ago at the age of 27. It was a major attack that kept me hospitalized and in a rehab center for months. Unfortunately at that time ther were no MRI's or DMD's. I recovered from that major attack with some permenent physical residuals such as left sided weakness. I went on fo 25 years without another attack. I honestly  feel blessed to have had those 25 years of feeling well and living a full life- finishing my masters degree, teaching for 23 years and raising 2 wonderful boys.

Unfortunately the MS demon began to raise its ugly head about 5 years ago. This time it came on with a whimper instead of the previous bang. I my mobility eas slowly regressing. I went to a neurologist and a year later I got the MS dx. I began Copaxone which unfortunately was not effective for me. Last year I suffered 2 major relapses which have left me permanently disabled.

I am now on Gilenya and hoping for the best.

I don't know if I would be in better shape if I had been on a DMD earlier but I do know that I would do anything to not be disabled. You have the advantage of modern technology and DMD's. If I were you I would research your options to prevent as much further damage as possible.

Keep in touch,
Deb

[sllowe]

p.s. Your spinal tap results may have been a strong indicator to your doctor, and may have dictated his next steps for you. Your tap was positive.

You may find this interesting reading:

"Intrathecal B-Cell Clonal Expansion, an Early Sign of Humoral Immunity, in the Cerebrospinal Fluid of Patients with Clinically Isolated Syndrome Suggestive
of Multiple Sclerosis"

http://www.nature.com/labinvest/journal/v83/n7/pdf/3780695a.pdf

[sllowe]

Hi Lili,

Welcome!

It's this early phase where Disease Modifiers have shown their full potential. With any luck, you'll never see another attack. It can, and does happen. It was suggested by another member here above to "hold off on aggressive treatment for now." While everyone is entitled to their opinion, there are absolutely no worthy studies where MS is concerned that support "holding off on on early treatment." It's simply not factual.

Like I said, it's the early phase where most success is seen. Jump right in, and get on a disease modifier like the doc suggests. There is a good chance this will not change to clinically definite MS. And, even if it does, early treatment yields the best results. Wishing you all the best.

Thank you for trusting us to thoughts.
-Shell

[doublevision1]

ps: if you haven't done so already, I'd encourage you to start requesting and keeping copies of all testing you've had done and all reports on your medical file, including CDs of MRIs.  This will help you to be clear on what you've had done and how your tests have been interpreted by the medical professionals evaluating you.  This is an important step in being fully informed about your own case and taking charge of your own health.

[doublevision1]

I'm on the same page as JJ on this one.  The emerging research confirms that treating CIS delays progression to MS in the majority of patients.  I don't consider the first line MS drugs to be 'aggressive' whether used to treat MS or CIS, and reserve that terms for drugs like Novantrone, Tysabri, etc.  To me, treating now is the conservative approach, delaying treatment more risky.  The problem is that you don't know how much time you have before the next potential attack, regardless of your young age.  And though I understand Kyle's point, I wouldnt agree that nothing about this disease happens quickly.  I went from being perfectly healthy (or so I thought) to experiencing severe, profound symptoms in a matter of days, including severe double vision that took about a year to improve and that has left residual damage.  I've had a bout of ON that started one afternoon and had me in the ER due to severe pain that very same night.  I'll always regret not pushing harder a year earlier when I experienced what I thought was an innocuous symptom which I now know to be Lhermitte's.  My neuro concedes that had that first attack been recognized for what it was, and DMD initiated at that time, it may have delayed onset of my MS and the major symptoms it brought, many having left residual damage including 24/7 neurpathic pain in my limbs.

I agree it's important to so your research so that your decision is fully informed.  On that note I too think a second opinion could be very worthwhile.

Good luck in your decision and I hope you will keep us posted.

[Lili1924]

Oh wow, wasn't expecting this many responses! This is great! Although realistically I know the decision is mine, I really wanted to get a second opinion from people who have some idea of what I'm going through. Nobody I know has MS or anything like it so that can leave me feeling a bit...well, alone is not the right word but you get the drift!

I would have to say I definitely think it was my first incident as, even though I would consider myself quite clumsy and was trying to write off the symptoms as that, when I look back now, there's clumsiness...and then there's MS symptoms! I was in the middle of writing my thesis and studying for my final exams so I think was using any excuse possible to reassure myself things were fine and that I'd get through. And I'd never experienced any real visual or sensory issues before that.

In terms of an episode, I actually don't think it was that severe. It just seemed very strange at the time because there were a lot of symptoms going on. I had diplopia, numbness on one side of my tongue, ataxia in my left leg, reduced sensation in my right hand and foot, and tinnitus in my right ear. Think that's everything! So in the grand scheme of things, it wasn't too bad. Once the ataxia resolved and the vision improved (ergo I looked and felt a lot less drunk) things got easier.

Unfortunately I'm not too up to date on all of the technical clinical knowledge of what I had done/what the test results were. I just know that I didn't meet the criteria for CDMS but will have to go back for 6 monthly neuro appointments and 12 monthly MRIs so if anything shows up there or any more symptoms crop up in the meantime, I get the diagnosis and start treatment. I'm just afraid of regretting not starting treatment...but starting it at the moment nearly feels like I'm volunteering to have the diagnosis. Not sure if that makes sense...probably doesn't as it's all a bit confused in my head anyway!

I must say, I'm so impressed by how knowledgeable everyone is here! It's really nice. And it's just so comforting to know you're not alone. I know technically I don't have an MS diagnosis...but I still feel different to everyone I know. So it's nice to talk to people who have an idea! Thanks so much.

[supermum_ms]

Hi and welcome to our little MS community,

I get the impression that you had a pretty big CIS event, if you're still not fully recovered after a couple of months. Am I right to assume you had more than one MS sx present and in more than one area, with a positive LP for MS but still only the one lesion showed up on your MRI? I am assuming that the MRI results are not meeting the Mcdonald Criteria, and the reason why you've been dx with CIS and not Clinically defined MS. If that's right, it makes me wonder if its possible that you've had more than the one attack, are any of your sx's something you've also experienced prior to being dx with CIS?

Do you by any chance, actually know what your clinical signs of lesions are? The neuro tests can show up lesion damage and they not be present on the MRI for various reasons, before MRI your clinical signs and sx pattern was how MS use to be dx. There is a rational for my questions, the research for CIS or CDMS is highly supportive of taking the proactive approach as early as possible, lower relapse rates, better disability status, quality of life etc. The Medscape web site is a great place to read about the scientific research, you have to join up but its free and we also have health pages you might like to read, found just to the right of your screen.

I would encourage you to be as fully informed about all the ramifications of what ever decision you decide, also looking at your sx list, what you've experienced will be unique to you but could help you decide the big picture for you. Maybe something else to consider, is whether or not a second opinion with an MS specialist would be worth getting, if there is a possibility that this isn't your first attack.  

Cheers............JJ  

[maxthecat43]

This is certainly a crossroads for you.  I too found out rather late that the odd symptoms I'd had for years were actually MS.  17 years down the road, and I am permanently disabled.  Everybody's case is different.  Who knows- you may never have another episode.  Not everyone with CIS goes on to develop definite MS.  For me though, I wish I had started therapy when I was younger.  I'll never know if it would have made a difference- but at least I would know that I did everything I could.  Diet, supplements, and exercise are going to be very important too.  

[TLC_31]

I usually encourage people to attack their MS aggressively, including use of a DMD. I started treatment immediately after diagnosis eight years ago. However, in your case, Lili, I’d suggest that you hold off from aggressive treatments for now.

Like Kyle, I lived in “blissful ignorance” before diagnosis, albeit for 10 years in my case. Had I been diagnosed off the bat, perhaps I could have avoided a few minor relapses, the major one that led to my diagnosis, and two major ones after diagnosis, but I also would have had to deal with 10 years of shots and pharmacy copays.

Unlike my situation then, you can be on alert. As soon as that first minor relapse comes, or if an MRI really lights up, you’ll know what it is, and maybe then you start a DMD. In the meantime, you can take care of yourself (certainly better than I did), paying more attention to diet and exercise. You can use simpler, less expensive treatments, like taking vitamin D or other supplements. I’ve not a believer in LDN, but maybe you’d want to look into that. And in the meantime, more effective treatments are likely to enter the marketplace.

[kwarendorf]

Hi Lili :-)

To treat, or not to treat, that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles
And by opposing end them.

Willie S. seems to have hit the nail on the head :-) The slings and arrows of outrageous fortune seem to be the path ahead should you choose not to treat.

Taking arms with a DMD might  allow you to postpone, if not exactly to end, a sea of MS troubles.

Only you can decide. You're young, have only one lesion and have had one attack. I agree that the positive LP complicates the choice.

Once I started looking, it took me only 8 weeks to get a diagnosis. part of that process included examining my medical history. It was determined that my first relapse was more than 20 years before my diagnosis. I lived those 20 years largely in blissful ignorance of the fact that I had MS :-) There weren't a lot of drugs around back then and there is no way to know if I would have benefited from therapies that were available.

If I were you I'd wait. If it is MS you have plenty of time. Nothing about this disease happens quickly.

Kyle