General Question

noraasnave's avatar

What are the advantages/disadvantages of being diagnosed with Clinical Isolated Syndrome (CIS) versus Multiple Sclerosis (MS)?

Asked by noraasnave (3094points) March 12th, 2012
17 responses
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I received a second opinion from a different neurologist today: CIS. She explained that they had caught my M.S. early. She seemed excited at the opportunity to perhaps find more out about MS through me (my blood). It is, of course, some of the worst news, but what can you do? I was kind of hoping that I would be diagnosed with MS…there is plenty of proof. Thanks.

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JLeslie's avatar

My knowledge is very limited on this, and I am not a medical professional. I think it means your doctor is hoping you will not go on to develop MS, but had a single neurological episode of some sort. Did you have an MRI? I think when the MRI does not show signs of MS this is also considered a good sign, and may be why the doctor has called it CIS and not MS.

Rarebear's avatar

@JLeslie sent this to me, but neurology has always been one of my weak points. I’ve never heard of CIS. Sorry.

noraasnave's avatar

@JLeslie I have had 2 MRIs about 4 months apart. The doctor told me that I had three very clear lesions one in my brain stem, one in my upper frontal lobe, and one in my spinal cord, She said that if I had 7 lesions then it would have been diagnosed MS. I also had a spinal tap, which had special proteins which indicated inflammation of my brain. I had two separate attacks 4 years apart as well.

cazzie's avatar

Is this a matter of semantics, perhaps? If you have the lesions and the proteins, it points to MS, but if you are a-symptomatic they call it CIS, so there are different drug protocols? I know they have some great new drugs for MS in the very early stages.

I would ask your doctor for a clarification.

noraasnave's avatar

I don’t want to stray too far from the original question, however, I appreciate your post @cazzie I have symptoms as well. Interferon-b is what they have been giving for treatment since the early 90’s, but I was led to believe that the amount of interferon increases perhaps.

I have heard about the drugs being tested right now.

JLeslie's avatar

I think @cazzie is likely correct. I guess now they break down MS into more categories, might affect drug protocols? Or, might just be a way to more specifically categorize how far along in the process a patient is, possibly never to get worse, or to go on to have full blown MS.

When people begin to get sick, especially with something that is chronic, they usually care a lot about, and desire a diagnosis. Want to know what they have, what to call it, what they are dealing with, especially if they have been going from doctor to doctor trying to find out what is wrong. Of course I don’t know what your process was like when you were first diagnosed, but maybe this applies to you. Then the person many times begins to take on the identity of the disease, it becomes a part of them. Maybe this did not happen to you since it had an episode, and then had many years free of symptoms, and now it seems another episode. Anyway, a different diagnosis might mean to you that now your idenity is changing, or what I mean to say is the diagnosis might mean more to you psychologically than physically in the end. You still seem to have the same physical realities, possible episodes, three lesions, and the proteins, no matter what it is called.

Sorry you have this diagnosis, I am sure it is scary and upsetting. Hopefully, it won’t progress more. MS, and other related diseases, seem to be very different in each individual. I know people who had very severe symptoms and died very young, and other people who barely had much trouble and lived with it for years doing very well. I know many many more people in the latter category.

Probably you should ask your neurologist directly what the different diagnosis means in a practical sense. You also might want a third opinion. And, I would read up on literature about it aside from just googling. Maybe go to the library and see if medical journals have information that might help you.

Hopefully another Jelly will have more information that will help.

JLeslie's avatar

Oh, I meant to say, make sure your blood tests include Vitamin D and B12. Probably neurologists automatically check B12, but possibly not D. I don’t think they will be magic cures if you are dificient, but I think they are borh very important for neurological health. MS is found more often in the US cold states, where sunlight is more scarce, and vitamin D is harder to come by. I personally have very bad muscle trouble when my D is low, my condition seems neuromuscular. I don’t have a diagnosis, I just know how the D helps me, and other people who have dramatic results. Maybe it will help retard the process you are dealing with? Can’t hurt probably. But, I am a big believer in having the actual blood tests, and not just popping large supplements. Also, the medical community os very mixed on their belief if D actually helps, because of conflicting studies, or not enough conclusive studies. I still say can’t hurt, may help, but if you take large doses of D you do need to have your blood calcium level checked, because D can cause it o go up, which can be dangerous, but it happens fairly rarely.

Lastly, make sure your iron level is good, and your thyroid levels. All blood tests. Thyroid would be TSH or thyroid Stimulating hormone on your blood work. Again, I don’t think either will cure MS or CIS, but they are both basic things I think should be tested that a lot of doctors don’t bother, and have a significant impact on our overall health and how well we feel. My advice is to try to stay as healthy as possible with what you can control.

noraasnave's avatar

@jleslie Thanks for the information. They have checked for the deficiencies and have ruled out all other possible known diseases.

I get what you are saying about identity. I know that I have to understand and completely absorb the identity for me to realize that it is just a facet of me, and not my sole identity. Have had to do this with many identities in the past: Single Parent, Divorcee, Marine, Electronic Repairman, and many more. I had to become them fully to realize that they don’t define me, but are merely a small revealing piece of me.

I appreciate the advice on asking the doctor, what the different diagnosis mean to me practically. CIS vs MS. I will do that, or my soul mate probably will.

JLeslie's avatar

@noraasnave Ok, good, I am glad you understood what I meant about identity. Some diseases we actually define the person that way. For instance people will say John is a diabetic, instead of saying John has diabetes. We all have stuff we deal with, but it should not so completely define us I don’t think, we are many things.

Good luck :). If you remember, come back to the Q when you have more info and give us an update.

cazzie's avatar

My mother in law has MS…. as does a very good friend of mine from high school. There is no thyroid test that is going to tell you more than what the MRI says showing the lesions.

I have an incurable immune disease. It does not define me. I think you are on your way to battling what comes before you. Knowledge is power. Be a powerful warrior.

JLeslie's avatar

@cazzie I did not say a thyroid test would diagnose or tell you more about MS.

cazzie's avatar

@JLeslie but you project your own medical issues on posters when it has nothing to do with their issues.

JLeslie's avatar

@cazzie Well, I do think vitamin D might be related as I wrote above. B12 is a neurological concern. Thyroid and iron are overlooked all the time, should be tested at yearly visits, and often aren’t. I know I say the same four tests on a lot of posts. Many time I am right that the person has a thyroid problem or low D. I am not assuming that at all with this poster, he said his tests were normal, I accept that. Obviously his doctor thought it worth testing also, so I don’t think I am so far off suggesting it. I can hunt down all the Q’s I was valid in my concerns on these specific test if you like? One girl going on about her symptoms, and I suggested graves disease and some people blasted me for throwing around diagnoses, and then she came back she has been diagnosed with graves. Another where I fought with one of our doctors about cardiac symptoms being related to a state of medication induced hypothryoid, and after the patient had very invasive heart tests, her doctors decided probably the thyroid. I feel pretty justified in suggesting those tests often. If they are negative, great.

I suggested a thyroid test, only because thyroid can cause muscle pain and weakness, and I don’t think it is related to MS, but an undiagnosed thyroid condition could make his symptoms feel worse. Again, I stated being as healthy as possible outside of this diagnosis.

I always try to say whether I think it might be directly related or not, and that there is conflicting conclusions in the medical community.

noraasnave's avatar

Well, I found one disadvantage of being diagnosed CIS versus MS. I was trying to get the navy neurologist to fill out a questionnaire about my health condition so that I can be transferred to the wounded warrior battalion on base, where I just focus on treatment and transitioning to a new life outside of the Marine Corps. Guess her response…

But…you seem…to function okay. In other words, sure you may have early onset of multiple sclerosis, which involves medicine with crazy side effects, and a lot of medical appointments, because you body is attacking your central nervous system, but you really only have a balance problem right now….so you should stay and continue to work at your unit. medicine, meant to get you back into the fight…not really concerned with one’s long term health or life.

JLeslie's avatar

@noraasnave But, they won’t send you to fight in anyway I would think? Well, you are Navy, not Army, I am not sure what job you do, but you are not on a front line on the ground I would assume. Honestly, I miss Navy medicine, but I can understand your frustration. Were you planning on retiring soon? Were you hoping for disability?

noraasnave's avatar

@JLeslie actually I am a Marine, but, yes, the same applies. I cannot deploy, I cannot check out a weapon. I already have a paperwork which limits me to physical training at my own pace, so that means no formation runs, or exercise with my unit.

On a side note, the Marine Corps doesn’t have our own medical services, the navy provides this service to us, as well as chaplains. We fall under he department of the navy.

The problem with Navy Medicine, first of all, is that you will never find a doctor that has practiced for 40 years. My Neurologist is in her early 30’s. My Primary Care Manager is in her mid 30’s. So, in my neurologists defense, I am sure that she hasn’t seen many of the diseases she knows about in her own family, so she is completely devoid of any sympathy, to illustrate I will tell you a short story:

Early in my relationship with this particular neurologist she advised that I allow her to do a spinal tap, to check for any problems,related to my balance issue. When I actually show up, She and another female doctor were there to greet me and my wife. She told me that both her and this other female had done Spinal Taps hundreds of times and that this other doctor would be doing it today. I didn’t care at that point as long as we got it over with quick.

I should have known something was up when they told me that I would going to help them direct the needle by which side of the body I felt pain on. I had recieved a spinal tap before for unrelated reasons and it was an “in and out” affair, it was over before I could even think about it. Not so with this particular time! Who I will now call the neurologist in training proceeding to dig and churn the needle in my back as if she had never done this procedure before in her life! Beads of sweat formed on my forehead and I turned pale as a ghost as I directed: through clenched teeth: “LEFT SIDE” to which she took the needle out, inserted it again and hit the same WRONG spot that she had before. My wife informed the doctor that it looked as if I would pass out. Both ‘doctors’ looked at me as if they couldn’t believe this experience would tax me at all (perhaps the test dummy that they had worked on hundreds of times before never complained). I however was losing conscientiousness.

Finally after a few more failed attempts by the ‘doctor in training’ to locate my spinal cord ‘compartment’ the needle was passed over to the neurologist, who, in a matter of seconds, not only located the sweet spot, but had pierced it effortlessly.

Then in conclusion, my back was killing me, I was trying to regain some color, when the neurologist tells me that I can go back to work now. In the past, I was given some pain meds, and a couple of days off to recover and allow the spinal fluid to regenerate. I was confused. I asked for the paperwork to be ‘sick in quarters’ (SIQ) in other words, to allow me to rest at home for a couple of days, to which she said, well if you think you really need it, you can be SIQ for one day, and if you continue to have pain take tylenol. I was shocked, she obviously had no sympathy, or no idea of the painful ordeal, her and the doctor in training had put me through.

Better yet, my unit is doing weekly 3 miles runs and such and she gave me not paperwork to excuse me. I would think at least a week to recover would be nice. I know that allowing one spinal cord area to heal is crucial, otherwise a permanent whole can develop and low spinal fluid can lead to migraine-like headaches can plaque one for the rest of life. I am not sure how much of these problems stem from ignorance, and how much stems from immaturity, but either way it shows some of the problems with Naval Medicine.

JLeslie's avatar

@noraasnave That shit happens in all trianing hospitals, and it’s awful when it does. I only allowed one screw up for certain things, and then demanded someone else do the procedure. I grew up with my medical care at Bethesda Naval, and I miss it. I don’t know how long ot has been since you received private medical care, but it is really awful all too often, and they are focused on money. At least at Navy they are salaried. In teaching hospitals you might go through am unnecessary procedure because they want to learn, which I find horrible, and on the outside they will schedule procedures because they can make more money.

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