Benign MS

How can one tell if they have benign M.S.?  Is there criteria for it?  Thanks!

[COBOB]

Under the ICD-9 Diagnostic codes, there is only Multiple Sclerosis (Many Scars.)  There is no diagnostic code for benign.  If you have scars, it can not be benign.  If kind of fails a test of common logic.  The progression of the disease my be benign (no disability,) but if a disease is scaring the brain, it is not benign.  The nine lesions thing has to to do with "Nine T2 lesions or 4 T2 lesions with a positive VEP  and one year of unremitting symptoms" is part of the Revised McDonald Diagnostic Criteria and applies to PPMS.  

Most people are diagnosed with the first McDonald Criteria:
2 or more attacks; objective clinical evidence of 2 or more lesions

Two or more attacks doesn't sound benign to me.

Even in CIS: 1 attack; objective clinical evidence of 1 lesion
(monosymptomatic presentation; clinically isolated syndrome)

The closest thing to "Benign MS" is going to Radiologically Isolated Syndrome where Dawson's Finger Lesions are present but the patient has never had an attack.  Once they have one neurologic attack, it becomes CIS.  It that attack goes on for one year, it is PPMS.  If the first attack remits and a second attack occurs then they should be diagnosed with RRMS.  This is what the McDonald Criteria tries to explain, and many providers manage to mess up.

Bob  

[COBOB]

There are some people (including doctors) that use this term.  It is really out of date.  It really looks like there are different rates of progression and levels of damage associated with MS, but even in cases of Radiologic Isolated Syndrome (RIS,) there is still some level of damage occurring in the brain (hardly benign.)  

Technically, there is RIS, CIS, RRMS, PPMS, SPMS, and RPMS.  There is no "benign MS."  If you have plaques, or "black holes" and no symptoms, you still have damage.  Hardly benign.

Bob

[HVAC]

Benign MS can only be determined at the end of the course of the disease i.e. at the end of your natural life looking at brain and CNS tissue. I started out with a slow Progressing MS but 40 years later it picked up speed. No one can say when MS Progression will increase. I was told that Benign stuff until I got an MS Specialist who takes all MS seriously. It is like being a little pregnant.

Alex

[supermum_ms]

I think some dr's seem to more often state 'benign' when the patient doesn't have a lot of disabling symtoms (symptoms) but they have more lesions than the magic no of 9, though from what we have discussed previously, the only way to know for sure that it is a benign form, is after you have died, a dx that can only be accurately determined though autopsy.

I can't remember who, but i'm sure there is someone (here) who was dx with benign MS and a couple of years later, he became disabled after a relapse. There lies the problem with a dx of benign MS whilst the patient is still alive, at any time their status can change and by then its too late.

I think Quix listed this as one of the MS myths, if your still breathing then there is no way to know if it is benign or not, so the dx of benign MS should always be questioned, a second opinion is in order.

Cheers............JJ

[COBOB]

Under the ICD-9 Diagnostic codes, there is only Multiple Sclerosis (Many Scars.)  There is no diagnostic code for benign.  If you have scars, it can not be benign.  If kind of fails a test of common logic.  The progression of the disease my be benign (no disability,) but if a disease is scaring the brain, it is not benign.  The nine lesions thing has to to do with "Nine T2 lesions or 4 T2 lesions with a positive VEP  and one year of unremitting symptoms" is part of the Revised McDonald Diagnostic Criteria and applies to PPMS.  

Most people are diagnosed with the first McDonald Criteria:
2 or more attacks; objective clinical evidence of 2 or more lesions

Two or more attacks doesn't sound benign to me.

Even in CIS: 1 attack; objective clinical evidence of 1 lesion
(monosymptomatic presentation; clinically isolated syndrome)

The closest thing to "Benign MS" is going to Radiologically Isolated Syndrome where Dawson's Finger Lesions are present but the patient has never had an attack.  Once they have one neurologic attack, it becomes CIS.  It that attack goes on for one year, it is PPMS.  If the first attack remits and a second attack occurs then they should be diagnosed with RRMS.  This is what the McDonald Criteria tries to explain, and many providers manage to mess up.

Bob  

[Rondi]

Thank you so much for your comments/feedback.  No dr. told me that I have "benign" MS.  I just thought I did.  I have more than 20 white matter lesions on the brain MRI.  This has not changed in the follow-up mri's (4)  I take Neurontin for sensory symptoms & am on wkly injections of Avonex.  I don't think i've ever had an "attack."  Almost all my tests, if not all, have come back negative (spinal tap, evoked potentials).  I was diagnosed about a yr. ago at age 47 & had trigeminal neuralgia (once) at age 23.  If I don't take the Neurontin (small dose), I notice the sensory symptoms (like spiders crawling on my body a few times a day).  Otherwise, I don't seem to have any other symptoms that i'm aware of.  I do occassionally get a very brief shooting pain on a limb & don't know what that's from.  Anyway, I feel very lucky & optimistic about my prognosis.  Thanks everyone & hope you are all well.  Many good wishes to all of you.