Think you have mild MS that doesn't need treatment?
 

Don't be so sure that any and all efforts shouldn't be made to avoid future disability just because you are benign right now or even at 10 years - a large portion of this 'benign' group progressed at 20 year followup.

Neurology.
2007 Feb 13;68(7):496-500.

Longitudinal follow-up of "benign" multiple sclerosis at 20 years.

Sayao AL, Devonshire V, Tremlett H.
Department of Medicine (Neurology) Room S159, 2211 Wesbrook Mall, University of British Columbia, Vancouver, BC V6T 2B5, Canada. tremlett@interchange.ubc.ca.

OBJECTIVE: To evaluate disease status after 20 years in a cohort defined as "benign multiple sclerosis (MS)" (Expanded Disability Status Scale [EDSS] score </= 3) at 10 years from onset. METHODS: Patients with an EDSS score </= 3 at 10 (+/- 1) years from onset were selected from the British Columbia MS clinic database. The 20-year EDSS score was the primary outcome. Potential risk factors differentiating those who "continued benign" (EDSS score </= 3.0) from those who were "no longer benign" (EDSS score > 3.0) at 20 years, including age at onset, onset symptoms, and 10-year EDSS score, were analyzed, and lower 10-year EDSS score cutoffs were investigated. RESULTS: Twenty-year EDSS scores were obtained for 169 of 200 patients (84.5%); of these, 88 (52.1%) continued benign, but 36 (21.3%) progressed to require the use of a cane (EDSS score >/= 6). Conversion to secondary progressive MS occurred in 45 of 196 patients (23%) with a relapsing-remitting onset. The only variable associated with disease progression at 20 years was the 10-year EDSS score (p < 0.0005); no 10-year EDSS score seemed ideal in predicting benign status, and an EDSS score </= 2 resulted in 32% becoming no longer benign. Discussion: At 10 years from onset, neither an Expanded Disability Status Scale (EDSS) score </= 3 nor an EDSS score </= 2 adequately represented "benign multiple sclerosis (MS)" because an appreciable proportion of patients progressed in disease severity. Appropriate and reliable criteria to identify which patients with MS remain with mild disability over the long term have yet to be determined.

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_DocSum

I've never really believed in the term "benign" MS. The disease is so unpredictable for everyone that it's almost impossible to try and determine what is a good course of action or not.

For 20 years after her first attack, my wife had few if any problems with her MS. She took nothing for it because nothing was available. Then it came back one morning and slowly progressed to SPMS within 5 years. Had any of the current drugs been available and she used them, her 20 years of success would have been attributed to the drugs. You just don't know with MS and each person has to make an informed decision as to what course of action they want to take.

Harry

Wow, this is news to me. I have had MS since I was diagnosed with RRMS in 1993. Since I have a low disability number, I would probably currently be listed as someone with benign MS. I had the impression that the first 10 years was pretty indicative of what will most likely happen in the future. I did have a couple really bad MS attacks early on, with lots of vertigo and coordination problems, but they didn't last too long. This new study is pretty scary since the disease sounds even more unpredictable than I thought. I'm praying that the significant amount of dietary changes I have made (particularly gluten & dairy free eating) will help. It has helped me to feel a lot better in other ways, so that's good at least...

jennyj, if you are not on any of the ABCR's you might want to do a lot of reading and thinking. It is a personal decision for everyone.

I had MS for at least 25 to 30 years before even getting a diagnoses. So, obviously mine was mild and would have definitely been referred to as benign (if there is such a thing). However, there came a time when it was no longer benign, and this led to a diagnoses. I was able to go back in medical records and find little things for all of those years.

Personally, I wish that I had been on medication earlier. I started within two months of diagnosis, but still I had already had it for such a long time. I know it would be a hard decision when you are not having much trouble, but it truly is an unpredictable disease.

Virginia

So True, Virginia. By the time, the ABCRs were available for me, it was too late for much help. I did try Avonex and Copaxone but progressed to SPMS.

I wish I had had LDN before progressing to SPMS, but, as it is, LDN is keeping me pretty stable for the last 4 yrs. It does not go back and wipe out the nerve damage that has already been done, but I did improve some and haven't progressed in disability.:)

It is a personal choice, but looking into your options wouldn't hurt. MS is a progressive disease. I had "Benign" MS, with just one exacerbation, for 30 years. Since I was not having attacks, though, the ABCRs really wouldn't have helped, I guess?

A change in diet and keeping general good health and perhaps taking something like LDN may keep the monster at bay, while you are having no attacks.

Love and Good Luck,

SallyC, what is LDN?

Here is their Home Page Link, Jenni. When you get there scroll down to the blue squares and click the LDN and MS link.

~ http://www.lowdosenaltrexone.org/

It shows pretty much all you need to know of the history and Dr. Bahari's discovery of it, for MS.

A lot has been added, as well, that you will find helpful.

Good Luck,:)

Thanks for the additional info :-)

Today I had a checkup with the MS neuro. The same one has been treating and following me for four years. I'm currently in the Tovaxin trial, but on my second try to have a positive test for MRTC's to make the vaccine.

If the test is negative, then I have to make a decision about treatment. We spoke today after the doctor looked at my MRI's from last week. Given my history, and my fairly clear-looking MRI's, I have the choice to go back on Avonex (which had the least side effects for me of the three I tried) or, go without treatment for awhile and just have regular checkups and MRI's to monitor the disease activity.

I still have to think about it, but I'll likely choose the no medication route if I can't stay in the Tovaxin trial.

Not benign but Swank helped
 

I've been dx'd nearly 20 years, but I had the symptoms of MS and/or Porphyria (my other dx) for 30 years before that. Not benign ever...caused grave trouble, although I still walked. The Swank diet I credit with keeping me walking and walking mostly straight. When I got off of it recently to try cocoanut oil for a week I suddenly lost ability to walk straight, got weak, had to lie down. Cocoanut oil was advocated for energy, to improve metabolism, and I think it surely did that, but it also is saturated fat, not on the Swank diet.

My MS was mostly hidden although I always had a slightly meandering walk and still do. My weak arms, eye hand coordination, dizziness, inability to "file" well, loss of IQ points, and finally Optic Neuritis brought me finally a dx when I had my first MRI. Since I always had Porphyria too, also undiagnosed, I cannot say always which caused what; but I'd say MS is benign, or mild, because of the Swank diet.
Since with Porphyria many drugs are problems, I am glad I have something else that really does make a difference. Some drugs have put me into Porphyria attacks. I don't know about LDN and Porphyria.

I am very depressed again, which comes on every time I have a good day when I'm active, get out, see friends....it always is the downer afterwards, and this time, way down. How to even survive it I do not know. I have to just wait.

Mariel

what are "mild" symptoms?
 

I see several people here saying that they had "mild ms" for years - what is mild? Virginia, for example, says that she had mild symptoms for over 25 years, I think - how did you know? What things did you feel during those 25 years that you finally decided were actually mild MS symptoms? Did you feel mild things every day or did you instead, simply have infrequent attacks every year or two, but those were acute, and nothing inbetween? So does mild mean mild symptoms, but the symptoms are there all of the time, or does mild mean mild attacks when they occurred - or does mild mean infrequent attacks, but severely acute when they occur? Or something different? Clearly, a measure of EDSS is one criteria.

I think that I have seen different people indicating mild in different ways. Would unobtrusive and non-disabling symptoms on a daily basis be considered mild?

For me, I consider my MS to be mild right now because I only have minor lasting effects from prior attacks. For instance, I feel some pain and numbness when anything very hot or very cold hits the lower half of the right side of my body. I also can have some fatigue, slight sensory problems, and brief periods of mild vertigo. I have had MS for about 14 years now (diagnosed at age 19), and in the past have had a small number of major attacks with coordination problems, vertigo, partial paralysis of my writing hand, and migraine headaches. So I guess I would still call my MS mild because I have only very little disability and have not had that many attacks (probably 10 or less). I don't know if that is the technical way to describe my MS, but it is how I describe it :-)

My neuro hates that term (benign) If you have a tumor removed and it's benign, that's the end of the story. Not so with MS, as we all know.

I much prefer, along with my neuro, the term mild MS at present. Who knows what will come tomorrow, next week, next year. That's why I'm on a CRAB drug to attempt to slow things down. So far my lesion load has not increased. I'd like to think that it's working, but who knows.

I consider myself mild mainly because I can walk without difficulty, and I have no eye problems. However, cognitive deficits can be just as disabling.
Even though I am considered mild, I am on Rebif because the MS hit me very hard in cognition.

Contrary to previous reports, researchers are now saying that cognitive deficits can be one of the first signs of MS. Before, they said that cognitive deficits only came later in the disease.

I am one of those "but you look so good" folks. It's only when we converse that they see my searching for words, losing my train of thought, and etc.

From the NMSS's Sourcebook...
 

http://www.nationalmssociety.org/sit...book_prognosis

Prognosis

From The MS Information Sourcebook, produced by the National MS Society.

It is generally very difficult to predict the course of MS. The disorder varies greatly in each individual but most people with MS have a normal life expectancy. Nevertheless, a few patients with very severe disability may die prematurely of infectious complications (such as pneumonia) so that the overall life expectancy is only 95% of normal.

There are some guidelines that may be used to infer prognosis. Several studies have shown that people who have few attacks in the first several years after diagnosis, long intervals between attacks, complete recovery from attacks, attacks that are sensory in nature (i.e., numbness, tingling, visual loss), and nearly normal neurological examinations after 5 years tend to do better. People who have early symptoms of tremor, in-coordination, difficulty in walking, or who have frequent attacks with incomplete recoveries, early development of neurological abnormalities, or more lesions on MRI early on, tend to have a more progressive disease course.

People with MS Can Expect One of Four Courses of Disease
MS tends to take one of four clinical courses, each of which might be mild, moderate, or severe:

* A relapsing-remitting course (RRMS), characterized by partial or total recovery after attacks (also called exacerbations, relapses, or flares). This is the most common form of MS. Approximately 85% of people with MS initially begin with a relapsing-remitting course.

* A relapsing-remitting course that later becomes steadily progressive is called secondary-progressive MS (SPMS). Attacks and partial recoveries may continue to occur. According to some natural history studies, of the 85% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years. More recent natural history studies (perhaps because of the use of MRI to assist in the diagnosis) suggest a more benign outlook that these numbers suggest. Nevertheless, many patients with RRMS do develop SPMS ultimately.

* A progressive course from onset without any attacks is called primary-progressive MS (PPMS). The symptoms that occur along the way generally do not remit. Ten percent of people with MS are diagnosed with PPMS, although the diagnosis usually needs to be made after the fact-when the person has been living for a period of time with progressive disability but no acute attacks.

* A progressive course from the outset, with obvious, acute attacks along the way, is called progressive-relapsing MS (PRMS). This course is quite rare, occurring in only 5% of people with MS.

Researchers are currently trying to identify more precise indicators of the prognosis or predicted disease activity.

----

Realize too that the NMSS says MS begins at time of diagnosis; not time of first symptom(s). If I went by first symptoms I've had MS 35 years. But since diagnosis I've had MS 14 years; now SPMS.

Not exactly sure why the National MS Society uses that concept, but, I imagine it is for statistical purposes.

Personally, I believe a percentage of the planet's population is born with a sensitivity to certain factors, or, a combination of certain factors - factors such as stress, toxins, viral infections. When a "good enough" catalyst comes into the picture, our hypersenstivity to that particular catalyst rears its ugly little head. It is then that our MS actually begins. It's degree of progression is also affected by stress, toxins, viral infections. Again, this is just my personal opinion.

MS is now being dxd in kids as young as two years of age, according to a neuro on the Montel program on MS that was on a week or so ago.

Zia

:eek: :eek: No, not THAT "word"! lol. I have such a bitterness with it. I suppose it might be because after 13 years with a "relatively easy" ride with MS (was in denial and able to blame all my sx's on something else).

Well late 2005 I went looking for a Neuro since I did not have one. One said "No MS" :rolleyes: , another "Post Viral Infection" :rolleyes: , and the next said "Benign-no need for treatment" Ok, sorry for all the :rolleyes: 's, but not 5 months later did I have a relapse that has completely turned my life around :mad: I have 2 small children I can barely take care of, in pain all day every day, etc...

Anyway, just hate the word! IMHO, NOONE can know if your case will be mild or not, hence the fact that MS is unpredictable...

Jena
 

Yes, isn't MS unpredictable!! I started out my first 4 years with MS with one acute attack after another. My neuro, who was trained at a MS Clinic, dx. me with PRMS.

Since September of '96 I haven't had an attack and things have settled down so since the start in '92. Now they say I started out as RRMS which turned now to SPMS.

Sorry MS has affected you so. Hang in there...