Start DMT's for CIS or not?

[Jennagreen]

I posted the background of my story in another post.

Just got my VEP test results back which was normal (if + would have been proof a previous possible exacerbation was MS and resulted in RRMS diagnosis). All of my rule-out tests so far have been negative/normal, still waiting on HTLV-1 and Neuromyelitis Optica

So now I guess I have a "possible CIS of Multiple Sclerosis" according to my neuro: Spine lesion at level of but not directly adjacent to disk herniation, oligoclonal bands>2, slightly abnormal WBC's-7, some hyperreflexivity in arms and legs. I guess the lesion could possibly be caused by disk herniation but OCB's and WBC's suggest it is demyelinating in nature. It is possible that my numbness and loss of toe strength symptoms (which have been subtly improving) could be due to the disk herniation, or they could be due to the lesion.

On the other hand VEP's are normal and no lesions seen on brain.

As I understand it a clear brain MRI greatly reduces the likellihood that a CIS will convert to clinical MS, but the presence of the OCB's greatly increases it. My neurologist says that she recommends following me with MRI's to look for development of new lesions. However she also mentioned that if I felt strongly about it she would prescribe injectible DMT's now.

My question to the community is WWYD?

My Physical Therapist says that in his experience I don't seem to have the symptoms of patients he's had that ended up being diagnosed with MS, and as far as he can tell all of the symptom's I've had could be coming from my spine, but he said it could just be really early in the disease. I can work out of an hour on the elliptical without feeling fatigued, in fact exercise gives me more energy. I do not have any signs of brain fog, cognitive dysfunction or depression. I do not notice feeling bad or increased symptoms after using the hot tub or sauna, though I have recently experienced just feeling bad/tired/yucky sitting in the sun too long. I have also noticed in recent years I don't like getting too hot/hot weather, whereas it didn't bother me in the same way when I was younger. I had attributed this to getting older (in 40's now) but wondering if it could be a sign of MS or more likely normal.

Obviously I don't want to start daily or EOD injectables if these test results may be some kind of fluke and not signs of underlying MS etiology, and if doing nothing would result in never having MS anyway. But if it is the early stages of MS wondering if the drugs taken now could delay or even possible prevent the conversion to clinical MS. Supposedly these rule out tests are supposed to rule out every other possible cause of the bands other than MS.

Could really use some opinions on what you would do in this situation. Obviously hindsight is 20/20 but that is something I don't have right now.  

    

[Jennagreen]

I don't know about the hyper reflexes symmetry vs. asymmetry, I will have to ask my neuro. She said that it "could be" normal.

My spinal tap also showed an abnormal percentage of lymphocytes (95%, should be 60-80% but my doc didn't make much of that)

In this recent instance my symptoms have all been coming from either the disk protrusion or lesion in my lumbar spine. I've had numb feet for 3 months. At worst numbness went up back of legs, buttocks and groin. Now it's just feet and getting some strength back in toes.

I had an episode of dizziness and weird visual blurriness- seeing halos of light around reversed out type on screens after pregnancy 3.5 years ago. Nothing currently showing on MRI. VEP test was done this week to see if damage to optic nerve detectable but came out neg/ normal. Not sure if that proves it wasn't MS or just that we can't prove whether it was or wasn't MS.

If you don't count my after-pregnancy episode, I do not "have a history of onset of one or more symptoms followed by at least 30 days and then the onset of other symptoms in a different art of the body."

I have been looking online to see if spinal cord injury can cause my positive spinal tap results. I saw it can cause demyelination but I think the OCB's are not a product of demyelination but of antibody activity, correct? I did find this study in mice showing spinal cord injury can trigger an immune response but it seemed to talk about lupus http://www.ncbi.nlm.nih.gov/pubmed/17081140

If all the rue-out tests are negative, does the presence of OCB's and WBC's guarantee an MS pathology? I read OCB's are permanent and I did have mono as an adolescent...I was very sick but never treated for viral encephalitis. Is it possible that I could have had viral encephalitis years ago which caused the OCB's which are still there?

I only have one symptom area at this time that is proven to be associated with a lesion, so that means CIS right now. If there is some other likely possible cause watching and waiting makes sense to me. But if there isn't, it seems smart to hit hard and strong and hope to stave off disease progression ASAP. My doc is recommending vitamin D and following up with MRI's. I am 45.5 with a 3.5 year old I need to care for...I have read that 60% of MS cases over 40 are the progressive variety...if MS is in my future the possibility of getting extra years of improved functionality/life is huge. If I already have the processes of MS moving forward in my body now I want to stop them or slow them down ASAP. Especially as it seems the progressive for can't be helped by the DMT's...maybe it can be helped or delayed in the CIS stage though?

[Quixotic1]

The push to get CIS onto a DMD is to prevent progression to full-blown MS, thus it makes no sense (to me) to wait for meds until you develop clear MS.  I you think about it, that damage that shows indisputable MS cannot be undone.

You have a positive LP.  Given that I see no reason to assume that the spinal cord lesion is due to mechanical trauma.  

The negative brain MRI - When demyelination is being considered the spinal lesion speaks volumes.  Spinal lesions are almost always symptomatic, whereas brain lesions are often silent.  

In using the McDonald Criteria to diagnose MS, the recommendation when the brain MRI is negative, the doc should do a spinal MRI.  If a lesion is then found it counts as a positive MRI and makes the likelihood of MS much more higher. I am not a fan of waiting for "more lesions", especially in the presence of a positive spinal fluid. but it comes down to your confidence in your neurologist.  

Now, when you say thee reflexivity in all your limbs is increased my question is whether or not it is symmetrical from side to side and top to bottom. If it is this is not likely in MS where you tend to see asymmetry.

The most important finding in diagnosing MS is the history of onset of symptoms.  Do you have a history of onset of one or more symptoms followed by at least 30 days and then the onset of other symptoms in a different art of the body.  That is, have your symptoms shown to be separated by time of onset and by location in your body?  That is the determining question - not MRI lesions nor LP results.

Quix

[Jennagreen]

Thanks for your response and sharing your story and decision.

I found this powerpoint about eary aggressive treatment for MS and it is making me want to start DMT's the second I know for sure if I have MS

http://www.slideshare.net/gavingiovannoni/early-aggressive-treatment-in-ms

I have seem some data suggesting that early intervention may prevent CIS from shifting to CDMS. So wondering from all this if it is possible to shift the course of the disease particularly if treatment is started very early.

[zerodegrees]

Hi There,
I am sorry you have to be here. I am new to all of this as well and I rarely post here, but read often. I am not advising you on what choice to make, but will share with you the choice I made.

I have a definitive recent diagnosis of MS (March 2014).

My main symptoms: sensory, hand tremor, and balance issues

My findings are:  Lesions in brain (many), c-spine, and t-spine; abnormal neuro exam, VEP normal, clear LP.

Because my LP was clear, my neuro said I could:

A) start DMD treatment now or  

B) wait and repeat the MRI in 6 months. If there are additional lesions then I would start treatment at that time. Also, the minute I develop new or worsening current symptoms I would start treatment at that time.

We chose option B. This is a slow moving beast, so I really feel that waiting will not harm me.  This choice will also help us to track treatment effectiveness better.

Good luck in your decision.