Do you expect to deteriorate with time?

[elly]

Hi guys,

I have recently been reading some posts on other ms forums and so many people seem to be doing quite badly with their ms.
So many different symptoms that they talk about like paralysis of a part of their body, total numbness, loss of bladder/bowel control, extreme fatigue, unable to cope with the heat, vertigo, dizziness, loss of speech, unable to walk etc etc.

I have never experienced any of these symptoms and i have had ms for probably 13-14 years. I only have sensory things and so very mild.

I'm now beginning to wonder if my turn will come to start experiencing all of these nasty symptoms. Is this a stage that i should expect i will have to face someday?
Should i expect to deteriorate? I know that there is no answer for this question...i'm sure my neuro would just shrug his shoulders and say i don't know .

I always wonder why i have escaped those types of symptoms.
Do you think everyone will have to get their turn of more severe symptoms or do you think that it's possible to go through life with ms and remain mild?

Elly

[Loobie]

Elly,

I'm glad to see you are having a "good go" of it as it were. I don't think anyone can definitively say one way or the other. However, 13-14 years with very mild stuff would give me hope for optimism. Maybe it's time to invoke the old "hope for the best, but prepare for the worst" motto and really try to be grateful for the course you are having. That way you won't ruin a good day worrying about what might happen.

[daverestonvirginia]

Elly,

I have had the same questions myself, although I have only known about my MS for a little over two years, so far almost no problems. I did decide to ask my doctor about it the last time I saw him a couple weeks ago, and you are right I received the who knows answer. He said just in his practice he has MS patients which for various reasons do not take any meds and have done very well for 20 years, others he has tried everything and they are not doing well at all. I choose to look at this in a positive way, just about anything can happen so why not hope for the best. Dave

[HarryZ]

Elly,

Like I read in one of the other replies, you just don't know what lies ahead for you when it comes to MS. It is different for each patient.

My wife suffered her first attack in 1971, just after she graduated from nursing school. About two months later, the symptoms went away with very little residual effect.

For the next 20 years, she went relatively symptom free and enjoyed an active, sports-filled life. Then, one morning in February 1991, she awoke with a tingling in her right foot. Five years later she had progressed to SPMS and had to quit her job. She fell awkwardly in 2001, broke her leg in 3 places and ended up permanently in a wheel-chair. She unfortunately passed away in September of this year from other health problems.

The stats show that most MS patients progress but to what level of disability you simply don't know. In the meantime, look after yourself the best you can and enjoy life to the fullest.

Harry

[robbie]

Are there any studies that show disabilty score of people that have ms(not just 200 but 100's of thousands) for more than say 10 or 15 years. It would be interesting to see what precentage you fall in. I think you have a very good chance of not being in a wheelchair, some unfortunatly are on the other path and not so lucky. When i was diagnosed the neuro said how you do in the first 5 years is a good gauge on how you will do in the future, what a bunch of bullshit that was. There is no way of knowing, just day by day year by year.

[treez]

The following text comes from a prominent University here in the U.S.:

The clinical course of MS is unpredictable. Neurologists are not able to foresee which newly diagnosed patients will have a benign course, who will have attacks, or who will gradually progress. Nonetheless, studies of large numbers of MS patients suggest that some disease-related factors do have some predictive value. The following factors are more likely to be associated with a favorable prognosis: (1) female gender, (2) age of disease onset earlier than 40 years, (3) a first attack consisting of optic neuritis or other sensory symptoms, (4) lack of significant disability 5 years after onset, and (4) minor abnormalities of brain MRI scan at the time of diagnosis. As a general rule, patients who have either difficulty walking or with sustained impairment in coordination after their first attack has resolved, and patients with a large number of MRI lesions have a less favorable prognosis.


Disability resulting from the first five years of the disease tends to predict the level of disability 15-20 years after diagnosis. Thus, it is often said that patients who have little or no disability five years after their diagnosis have the most favorable prognosis. Fifteen years after diagnosis, approximately 50% of patients will use a cane or other assistance to ambulate. Twenty years following diagnosis, approximately 60% of MS patients are still capable of ambulation, 20-30% maintain employment, and less than 15% require custodial care. Life span is shortened only slightly compared to the general population.

I have seen similiar prognoses many places. This in mind..... I have to say you're doing well and have the cards in your favor.

My thinking has always been, and will continue to be, do everything possible to stay well as long as you can. Enjoy life!

Although I wouldn't hold my breath...perhaps while we're still well, a better treatment will come along to help prevent deterioration. At this point, there are several promising agents in the "pipeline". It wouldn't take much to better the poor effective rates currently available!

Treez

[AllyB]

Hey cool Elly, I am so glad that you are doing so well.

Possibly you have the so-called 'benign' ms, being so well after so many years may mean that any symptoms you experience during relapses may mostly resolve! That would be great - even given the highly unpredictable nature of the disease, it is possible you may never have more than mild deficit - no guarantees of course, but the stats are on your side. While it would be unwise to totally ignore the future dire possibilities, in your case it seems they are more possibilities than probabilities, and some comfort may be drawn from that.

Good luck and enjoy the health that you have - we are all pleased that you are ok - happy stories might not sell newspapers, but they are most welcome and uplifting here, for me anyway.

Thanks

[elly]

Thanks guys,

I do wish that there was some kind of data that showed how people with mild ms may do over the long term, unfortunately with such a ridiculous and unpredictable disease it probably is not going to be possible.
I sometimes wonder if ms is really that unpredictable...

Now if only i could stop my first thought of the morning being "can i move, walk, speak, feel my body"

Elly

[Rudi]

Hi Elly,

I thought you just got diagnosed?

I think all of the research done on progression is started at diagnosis rather than initial symptoms, so I guess all of this research applies.

However as you say your disease sounds very mild (if it's taken 13-14 years for it to get bad enough to diagnose) so my guess is your progression will be very slow; especially if you look after yourself. I certainly would not wake up and worry about moving your legs!

Rudi

[elly]

Rudi i have been diagnosed for about 7-8 months but i've had sensory symptoms that i remember for a least 14 years (things i thought everyone had...like l'hermittes ).
My neurologist thinks i have most likely had ms all this time.

Elly

[Shayk]

Hi Elly and all

Given the interest in this topic (even though I know it won't answer your question Elly) I thought I’d post links to some abstracts (several full articles are also accessible).

Age at disability milestones in multiple sclerosis

For the 1844 patients, median ages at time of assignment of irreversible disability were

44.3 years... for a score of DSS 4, (limited walking but without aid)

54.7 years….for DSS 6 (walking with unilateral aid)

63.1 years …for DSS 7 (wheelchair bound)

prognosis in multiple sclerosis appears, at least to some extent, as age-dependent and not substantially affected by the initial course, be it exacerbating-remitting or progressive.

Natural history of multiple sclerosis: a unifying concept

The natural history of multiple sclerosis: a geographically based study 9: observations on the progressive phase of the disease

For the entire cohort, median times to reach Disability Status Scale (DSS) 6, 8 and 10 were 12.7, 20.6 and 43.9 years, respectively.

These findings demonstrate that among SAP patients, the degree of recovery from the single defining exacerbation had no significant effect on outcome.

The site of the original attack was not usually where progression began.

The relatively stereotyped nature of the progressive phase seen in all progressive phenotypes suggests regional and/or functional differential susceptibility to a process that appears degenerative in nature.

The highly prevalent distal corticospinal tract dysfunction in progressive disease and the pathologically demonstrated selective axonal loss seen in this tract raises the possibility of a dying back central axonopathy, at least in part independent of plaque location or burden.

Natural history of multiple sclerosis: risk factors and prognostic indicators

SUMMARY: Overall course and prognosis in multiple sclerosis is most likely to be related to age and the occurrence of the progressive phase of the disease, rather than to relapses or other clinical parameters. Individual prognosis remains hazardous.

Take care all…

Sharon