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Multiple Sclerosis Community
9.17k Members
695000 tn?1316139648

How did you decide to get treatment?

Hi. If you read my 1st posting here, you would know that I have decided against any kind of treatment for now.  I have been told by many that I am making a mistake and I should have started a.s.a.p. but I am not convinced and my symptoms have been minimal since I was diagnosed (2 years ago).  I was just wondering if anyone was willing to share how they decided to get therapy?  Was it just a doctor's suggestion?  Fear? Really bad symptoms?  What was it exactly that made you decide to take medication?  And if you have time, please let me know if you see any effects?  Are you feeling better since you started the therapy?  Side effects?  Has anyone looked into anything else besides medication?
Thank you.
18 Responses
147426 tn?1317269232
The points that would convince me now to get treatment even if my symptoms are mild are these:

1)  The best time to treat is early in the disease.  Any treatment done early in the disease (the first several years) is more effective than the same med and length of treatment done later.  Once symptoms turn bad it is too late to start the meds and expect them to have their full usefulness.

2)  There have now been recent studies of people who have not been treated because of "benign MS."  One was examining how well these people were walking at 15 and 20 years after diagnosis.  For almost a third of the people the disease was no longer benign and they had difficulty with walking requiring some assistance.

The second study on "benign MS" was something that for many years was ignored and that is cognitive function.  At 20 years 29% of the people had noticeable deterioration in their cognitive function.  About half of those had significant reduction in their cognitive ability.

The emerging view is that there is such thing as benign MS at diagnosis, but it can only be diagnosed at the end of life in hindsight.  We have no good predictors of who will drop out of the "benign" category.  You can say that "so far things have looked benign."

So your odds without meds are about 2 in 3 that you will be "okay."  And 1 in 3 that you will have trouble walking and/or thinking.  Not that great.

Occasionally, a person with previously mild disease will suddenly enter a phase of fairly rapid and severe worsening with pain and disability.  We have several of those here on the forum.  I hope they see this and speak up.

The current MS meds do not promise and aren't expected to "make anyone better."  What they have been shown to show in about 40% of the people who take them, is a slowing of the progess of the disease and a slowing in the deteroration/atrophy of the brain.  The meds do not improve current symptoms.

Now, I know how bad MS can get.  I was willing to try the treatments that have real evidence and a real chance of slowing this deteroration.  I felt I owed it to myself and the people who are going to have to take care of me if it all doesn't work well enough.  It's the best shot we have at this time.

My side effects are mild muscle aching for about 12 hours after my shot once a week.  I sleep through them and only notice when I get up to pee.

I could have waited for the promised "better meds" to come along, but, as a physician I have seen too many promised meds either never arrive or arrive only to show unacceptable side effects and be removed from availablility.

Your decision is always your own.  But 2 years of mild disease is not a strong predictor of your future course.  The best predictor is 10 years, when your best window of opportunity for effective treatment is already past.

But, we also have others who have decided for various reason to not use a DMD.  We all have to live our own lives.

Quix
Avatar universal
This whole thread, questions and answers, would make a great Health Pages addition. It's very concise, and Quix has summed up the situation perfectly.

ess
382218 tn?1341185087
Ditto on all of the above points.  I was not motivated by fear to start treatment.  I was motivated as a result of educating myself through the reams of literature I read (New England Journal of Medicine; Journal of Multiple Sclerosis; Journal of Neurology; etc) which favour early treatment to potentially prevent irreversible neurologic damage.  Forgoing DMD treatment and hoping for the best was not the right choice for me.
195469 tn?1388326488
Quix, you explained it so well.  Well done, girlfriend, as always.  As Ess said, this should be a part of the "Health Pages."  Great article and great advice.

Even though my very first MRI showed 5 lesions in the brain and one in the spinal cord..until I had my first "attack," I noticed NO troublesome symptoms of these lesions in my brain.  We all know or can surmise that these lesions were probably in my brain, before my first attack.  This was at age 42.

Even back then, there were physicians that did not understand the importance of starting any DMD treatment early.  So I had no treatment for the MS for the first 4 years after diagnosis.  My MRI's remained stable, even though I was clearly having relapses and remissions.  No lesions enhanced to indicate any active demyelination process.  So Neuro #2, basing his decision totally on no signs of progression said, "This can't be MS.  MS doesn't do this.  You would have seen an increase in lesions by now."  So he took away my diagnosis, despite continuing symptoms.  As you imply Quix, these are years that are lost and lost forever.

Neuro #3 also did an MRI and found that my lesions was the same at 5 years out.  One thing that did show change, was the LP.  So again I had a diagnosis of Relapsing/Remitting MS.  I was immediately put on Avonex.  As this Neuro said, precious time had been lost, when I was not treated with any DMD from the very start.

Three years of Avonex, then I quit taking it on my own.  Neuro #4 did another MRI after two years without DMD's and found 12 lesions now in my brain.  I was immediately put on Copaxone.  Now one year out, I have had no increase in lesion load, despite continuing symptoms and minimal brain volume loss.  I believe due to taking a DMD.

I truly believe that it were not for the DMD's that I did take, that my lesion load would be much greater and possibly my disability greater.  We know that brain tissue is lost with continual demyelination.  This is brain tissue that cannot be replaced.  

When I person's symptoms are mild, they are in a kind of "denial," that MS is really active and causing damage.  This lady is here to tell you, that whether you "see" activity on brain MRI's, MS is always active.  Many times doing damage that cannot be seen on MRI.  Then suddenly, those lesions that could not be seen on MRI, are seen clearly.  Probably due to MRI's equipment that now have increased strength, to see what could not be seen before.

So to take a DMD or not take a DMD based on your symptoms?  Your symptoms can remain fairly mild for a long time or a short amount of time, then suddenly without benefit of DMD therapy, things suddenly turn worse.  You have now lost those years when the DMD's could have helped the most.  I'll take that 40% chance any day, that the DMD's are keeping the MS from destroying more brain tissue.  They have been shown to be effective, so that's all I need to keep taking my shots regularly.  

It's like diabetes...you don't "feel sick," or high blood pressure....so you don't take your medications...then suddenly, you lose your eyesight to damage from diabetes or suddenly suffering a stroke or heart attack, because you chose not to treat your blood pressure.  "You felt well, remember?"  When all this happens the damage has been done.  Just like diabetes and high blood pressure, MS can seem silent and show no outward signs that it's active...but you chose not to use the MS medications.  Suddenly one day...you have that event that changes everything and you suddenly begin to progress.  Then you ask yourself, "Why didn't I take those DMD's when they were offered to me?  Even though my symptoms were mild?"

It's the damage you DON'T see, that will be your downfall.  It's not worth the risk, in my opinion.  Too many of us here on the Forum went without treatment for too long.  There are many here that will tell you that they wish they had those years back.  If only they had taken the medications that were available or had a doctor that didn't count lesions and gave them a a diagnosis (especially when it was slapping them in the face all along), so they could get their diagnosis. And start DMD treatment.  If only....

"Auspicious" you don't want to be one of those people a few years from now saying, "What if I had taken those DMD's when I was given the chance?"  If only....

Sorry to have written a novel here.  I am very passionate about this subject, since Iam  now 13 years out and am one of the ones that did say, "If only....."  How my life today, may have been so much different.

'Auspicious,' I do say all of this, with the utmost compassion in my heart.  Each member on this Forum is part of a family.  We all care for each other...so it's with this passion that I plead with you to reconsider the DMD's.  For your future.....  I never want you to say, "What if?"

All the Best,
Heather
572651 tn?1531002957
Hi Auspicious,
The forum members above had done an excellent job of posting specific reasons why dmd's should be started as early as possible.

My reasons, beyond those, are I value being able to walk, to dress myself, to take care of my own hygiene needs, to stand at my oven and cook, to be able to drive to the mall and shop when I want, to socialize normally at eye level and not from a sitting position, .... need I go on?

Please please consider starting the drugs immediately - it is your best shot at normalicy!

Lulu
620048 tn?1358021835
This was a good topic, since i recently brought up being older before being dx'd with MS.
I had no idea until the fatigue hit me and lots of pain. Not sure how much the pain had to do with it but those were the first two problems that started the testing.  I did know that if I have it at this age then I had it earlier in my life and just had not known it.  I was not sure whether or not the meds would help me or not.  You can always hope that it coud still slow it down from this point.  I do feel as if it is getting worse now, especially my eyes.  The fatigue just got worse and never improving.

So its good to hear all of this.  And I too appreciate knowledge anyone has to share on this topic.

thanks, meg
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