CIS and MRI

[Earth]

Hello,

I read on the UK MS website:

"Low risk of developing MS: When CIS is not accompanied by MRI-detected brain lesions, the person has about a 20 percent chance of developing MS over the same period of time".

How can that be?

What if the neurological symptoms were caused by an infection or another disorder that is not linked to MS (e.g. vitamin d/b12 deficiency)?

I was tested with brain and spine MRIs, as well as with two evoked potential tests (i.e. all tests were normal), and was told that it is really unlikely to be MS-related (i.e. in my case a viral infection was suspected, even if nothing confirmed that), and now I see that in fact I could well be in that 20 percent category? The way I previously understood it was that no MRIs evidences potentially put you in the box of the 5% percent of people with MS that don't have lesions, but not in the 20% box of people who may subsequently develop MS...

Also, the MS society defines a CIS as monofocal or multifocal (i.e. one or more lesion present on MRI scan), so how can someone who present neurological symptoms without MRI evidences be put in the category of CIS?

Any clarifications or insights would really be welcomed!

EARTH

[1eye]

I wouldn't expect categprizations of CIS or other types of MS to ever make any sense. Medical/science people don't know what to make of the evidence or lack of it.

[Snoopy]

Hi Earth,

The way I previously understood it was that no MRIs evidences potentially put you in the box of the 5% percent of people with MS that don't
EARTH

There are 5% of those diagnosed with MS who did not initially have MRI evidence of the disease. To receive a diagnosis without MRI evidence is quite rare as the 5% would indicate. The 5% that did receive this diagnosis will go on to have MRI evidence at a later time. To receive a diagnosis of MS or CIS there needs to be other testing that would indicate MS as a possibility.

Symptoms alone will not get a patient a diagnosis of MS or CIS

With all of your testing being normal MS would not be a consideration.

[Earth]

Hey Family Elder, thank you for your message.

But so, do these 5% initially belong to the group of people having a 20% chance of later being diagnosed with MS after having had their first neurological attack/symptoms?

In any case, I would agree with you that a CIS requires, according to me, some form of abnormalities in tests, but the MS website has something else to say about that apparently...

Take care!

[Snoopy]

The diagnostic criteria for MS, Revised McDonald Criteria, is used internationally. The following links are from the National MS Society and might answer your questions better than I can verbalize in written form

National MS Society:
Clinically isolated syndrome (CIS) is one of the MS disease courses. CIS refers to a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation or demyelination (loss of the myelin that covers the nerve cells) in the central nervous system (CNS). 

http://www.nationalmssociety.org/What-i ... rome-(CIS)

http://www.nationalmssociety.org/For-Pr ... d-Syndrome

I was diagnosed a long time ago and under a different criteria. I was in the middle of a severe exacerbation (relapse, attack, flare-up), through the entire diagnostic process. My MRIs were normal, Lumbar Puncture was positive (o-bands) and all other tests were normal or inconclusive. I was diagnosed with Clinically Definite MS (CDMS) which put me in that 5% category. When I had a second exacerbation a year later any doubts about my MS diagnosis was removed.

If I had the same experience under the current criteria I would more than likely have been given the diagnosis of CIS (or not) and would need to wait for the next Neurological event, in my case that would have been a year later, for a definite diagnosis of MS. This is just speculation on my part. To be in the 5% category is probably less now based on current criteria.

[Earth]

Hello again Family Elder, and thank you for your testimony. Having had normal MRIs like I did somehow reassure me less than I initially thought it would, as now I am 'condemned' to wait and see if I get a second attack or not for an indefinite period of time, which is rather stressful. Do you think that I should ask for a LP, as this may somehow add some certitude or light on what could potentially be going on with me.

Also, on another note, may I ask how you are doing now? I know that MS is a very individualised condition, but I read some studies suggesting that people who do not show any evidences of demyelination on their first MRIs tend to have somehow a "better" prognostic on the long term in terms of EDSS score. Do you have any thoughts or knowledge on that?

In any cases, thank you for your time and clarification, I appreciate it a lot.

[centenarian100]

Earth: It is quite common for people to have a single demyelinating event and not go on to develop multiple sclerosis.

For instance, based on the queen square data on CIS, about 20% of people developed MS after 20 years if they had zero lesions typical of MS on their initial MRI brain.

Generally speaking, it is not recommended to treat patients with CIS (i.e. optic neuritis or transverse myelitis) without brain lesions with MS drugs because the risk would outweigh the benefit. To think of yourself as "condemned" to not take drugs is absurd. you should think of yourself as lucky to have a low risk of developing MS. If you think about it, your risk of developing cancer or heart disease is probably significantly greater than 20% over your lifetime, so you should be at least equally concerned about these problems. No one gets to live a risk free life.

Generally speaking, a spinal tap is not recommended in CIS if you don't have any brain lesions because it would not affect the management of the condition. In RIS (radiologically isolated syndrome), spinal tap findings have not consistently been found to predict risk of MS.

Would you be able to tell us what your initial attack was? Did you have optic neuritis or transverse myelitis?

[Earth]

Hey centenarian100, thank you for your answer.

Basically, I developed a rash on my chest in January (i.e. it really looked like a little shingle, 3cm in length and 1 cm in height on my middle right side, but my doctors said that it was not a shingle, without providing an alternative opinion). About one week after developing this rash, I started experiencing strong burning sensation on my upper back and shoulders, especially at night. This sensation lasted approximately two weeks and fluctuated in intensity during the day, being mostly present at night time (the rash was still there by the way; it stood for about one month).

During that same time, I developed what I would call a little perceptive weakness in my right leg, which lasted about 4 days. The sensation is really hard to describe, but it felt like my leg was basically a bit more hesitant, and maybe a tiny bit numb on the calf (i.e. I am saying a bit numb as when I pinch it, it provides a bit less pain that on the left calf, even though I could very well feel my leg).

Throughout this time, my skin was really sensitive to touch all around (doctors said presence of "dermographism"). After two weeks, the burning pain started to fade away, even though my skin both remained really sensitive to warmth/touch and started to develop little red flat dots/rash of about 2 to 7 mm on my chest (about 8 to 12), shoulders and neck that would each stay for about 5 days and then peel and leaves little discoloured marks on my skin.

At that moment, I had a blood test done, which came back pretty clear except for the fact that some liver enzymes were a bit elevated and that my vitamin D were at 12. I was pretty much symptom free at that moment (about 3 weeks after the initial symptoms), and then one night (5 days later?) my right leg started to have burning sensation and tingling for no reason (we are in February here); these sensations made their way up to my knee. The tingling was intermittent, as well as the burning, which was nonetheless more constant. The tingling stopped after two days (so relatively short and not constantly there), and the burning continued to the extent of enveloping my entire right leg; this leg felt, again, a similar sensation of perceptive weakness (when I say weakness, I have to say that my walking was not affected and my doctor at the time tested me and said that both legs were symmetrical in terms of strength).

A couple of days later (still in February), my left leg's muscles started to become painful around the knee and calf area (stiff maybe?), as well as the left harm, and then the right leg as well, and sometime a bit on the chest (the chest wasn't stiff, but I had muscular pains from time to time). These pain were muscular and coming from the bone, they were also continuous and especially there when walking (not there when cycling, however). My back also started to muscularly hurt, a bit everywhere on it, but mainly where the burning sensation previously occurred. My legs' joints started to make a lot of noise/clacking if I would stop moving them for a couple of minutes and then start to move them again.

In the next couple of days, things started to improve, but nonetheless I started to develop plenty of other sensations all around my body: the tip of my tongue felt somehow a bit number (could be the anxiety), my lips felt warmer/hot, I would have a dry mouth and be super thirsty all the time for about 4 days, my right jaw would start to have burning sensation that later on substituted to leave sporadic and "fast/rapid" intermittent "shooting pains" (later on, these pains substitute to leave muscle pain, as when I opened wide my mouth it would hurt).

All these pains were gone eventually... However, about 1 month and three weeks after the onset of all of this, I felt for three days burning sensations that would move everywhere pretty much on my body and would last between 5 seconds to a couple of minutes. These burning sensations transformed themselves into shooting pains all over (like if someone would pull my nerves like guitar strings basically); this lasted about 4 days as well. The previous nerve pain of my face started also to crawl up to my upper head/skull, which lasted for a couple of days. I developed twice a sensation of humidity/water droplet on my right knee; these occurred during slightly stressful moments. These sensations all faded away (we are 2 months after the initial rash on my skin). The part under my knee felt one day some deep radiating pain that would burn for a couple of seconds then go.

My temperature was during the most accute phase of these symptoms between 36.5 during the day up to 37.8/38 at night sometime.

Since the last couple of weeks, the temperature is normal, and things improved, as I have everyday a little thing, but nothing significant enough to be stressed about... Some muscular pain maybe one day, and another day my toes may feel twice a day a little sensation of warmth/burning for a couple of seconds. Apart from that, my fingers are quite stiff and their muscles are not exactly painless when moved. I have also quite a bit of fasciculations that come and go around my body (more than I had before all of this started, at least).

I did three blood test (ordered by my GP, then neuro, then a systemic disease specialist), and these tested for autoimmune disease (e.g. Lupus and Rheumatoid Arthritis - ANA negative), Lyme, HIV, B12 vitamins, and plenty of viruses, potential inflammation, etc. All came back clear except Vitamin D, which were at 12 (I have now been taking supplements for 14 weeks). I also had positive "cold agglutinin" (i.e. 4), which my doctor say it could be a left over from a recent previous infection/immune response (maybe the rash stuff?). I did a EMG test, which came back normal, and did two Evoked Potential test for my lower limps today (sensomatory; one was a laser one?), which both came back normal. I had a brain MRI and full spine one as well, which both came back normal.

My neurologist says no to MS (she initially said no, and said that the rash must have been caused by a viral/infectious agent that provoked/triggered all of this), and one of my generalist says that these symptoms do not even constitute a neurological event that could translate into a CIS (she says that this is not a CIS, as it does not even fit with how MS clinically present itself normally; my symptoms are too varied and generalised, and you would expect to see lesions if these were provoked by a CNS dysfunction... my understanding) so she says that I don't belong to the CIS category that has 20% chance of later on developing MS.

In my way of thinking, I am not sure either that I belongs in this category, as this category appears to not take into consideration the fact that so many people could develop neurological symptoms due to other causes that are completely different from a CIS/MS relapse... it is somehow an arbitrary category according to me, as it somehow says that everyone who one day develop a neurological problem will necessarily go into this category, whatever the trigger may have been.

I apologise in advance for the length of this message, but I thought that a little chronological development would help you to better understand my situation... According to you, is that a CIS then?

Thanks, and all the best!

[Earth]

Anyone with a clue?

[centenarian100]

Earth: I don't think that I am the right person to answer this question, but it sounds as though a professional neurologist who is familiar with your history, exam, and imaging results feels that you have no sign of central nervous system inflammation. Of course, s/he could be wrong, but this is very reassuring. If I were in your situation, I would probably take their word for it an enjoy life. Maybe take some vitamin D for good measure

[1eye]

I told you they could not make head or tail of this. They still don't know what "MS" is, so how can they "diagnose" it? CIS is a single clinical event which as far as I know (which isn't very far) means you went to a clinic. Not an MRI clinic. Anyway has the so-called or Revised So-Called MacDonald Criteria ever been published anywhere that isn't just a sales pitch to would-be Witch Doctors* requiring the spending of a little cash, hard-earned or not? And how can a single anything be called a Syndrome? I think some people have their head very far up their Anatomical Impossibilities. Or at least 5%

I think the best test for MS is the old Bathtub Test. This should not be done without the help of a strong individual who can catch you when you collapse and nearly drown, and help you get yourself out of the tub, because your cooling system cannot handle a hot bath. Why is that? Something to do with veins and Italians from Ferrara who drive ice-cleaning machines.

*Witch doctors (WDs) treat all forms of health concerns, from acute to chronic, geriatric to pediatric, magical systems to quantum phenomena, from the physical to the metaphysical, even to the ultimate health challenge; raising the dead. http://witchdoctor.ca/

[vesta]

Greetings:

I never heard that MS was associated with a rash and/or a fever. Sounds like a shingles type disorder to me or herpes. I would simply do everything to reinforce one's health - optimal diet, supplements etc..(Myself, I would find a classical homeopath.)

Best regards, Vesta