To treat or not to treat

Had first MS episode (numbness/weakness on right side of body) in 1988 - had mri & spinal tap - dr said probable ms.  Had optic neuritis in 1991 - not aware at the time that it could be related to MS.  Am currently have another episode of optic neuritis - opthamologist refered me to neurologist - confirmed MS.

In 1988 I had 4 legions on brain.  I now have 9 or 10.  Other than the 2 bouts of optic neuritis, I am not aware of any other major MS symptoms, and am a relatively healthy 45 year old wife and mother.

Whe neuro confirmed ms he said I had 3 options at this point...
1.  Do nothing - since I have been relativley symptom free for 20 years chances are that I will continue to have mild ms and not need medication. He said that Mayo clinic still believes that 25 - 50% of MS patients do not need any drugs.
2.  Go on one of the approved ms drugs
3.  Participate in a clinical trial drug (there are 3 going on in the center I go to).

I am inclined at this point to go with option 1 - nothing.  If I get another relapse then possibly go on one of the approved meds.  

Any comments/suggestions/food for thought are greatly appreciated.

[gollie]

Hi Jewski:

I am sorry to see your story here and that you have MS.
But I am glad that you are not seeming to have a bad
progressive coures.
You have come to the right place for advice.  I can only give
you my own opinion on why I choose to treat with the Abc or DMD(that is
the abbreveation we use on the board for them)drugs used for MS.

There are 3 or 4 types of injection drugs used for this for less
progressive forms of MS:
1. Rebiff
2. Avonex
3. Betaseron
4. Copaxone. (I use this one).

I was able to choose which one I want to use, most people get
a choise from their doctor, because they each may carry different
side effects, and some have to be injected every day and others
once a week. the reason the patient normally gets to pick is
due to what the patient feels is comforatable and convient for them.

Now the up side of this treatment is Very Important. These meds can
help to lessen the development of new lesions, and also help keep
the imflamation down on existing lesions. or keep them from getting
larger. This is what the drugs do for us.
Therefor helps to slow the overall progress, and can help slow down
relapses and relaps times. (just depends which DMD you choose)

One example I can give you espeially with known Optic Neuritis, which
can really damage your eye site with too many attacks. or even one bad
attack can leave permanet damage.

Example: If there is a lesion near or on the optic nerve, then when it
becomes imflammed during an MS relaps it can cause another bout
of optic nuritis.

I have small lesions and 3 or 4 larger lesion.  I Certainly choose to use
the copaxone, to slow the progress of these lesions. The more areas
of the brain or spinal cord that have lesions are just that many more
parts of you body that can be affected by them.

I know that you are saying that you dont have alot of symptoms, But
ON can get pretty serious, (after all it is your eye site)
I can tell you I would not risk that. I also have ON  in both eyes.
So if the DMDs can help slow this progression for me among other
thing the MS is doing to my body then I darn well am glad to have
somthing to fight with.
I hope I am making sence to You?

Just my opinion but you have so many lesions!!!!! And ON!!!
It would just make plain sense for you to have been on DMDs
even before now.

I can understand that if you dont have alot of pain and other problems
that you would not want to take other types of the drugs that we get
treated with for nerve pain, or fitigue and things of that nature.
But the DMD drugs are the only way to fight progression.

I hope this make sense, I am sure others will be along
soon                                                                           Gollie

[essdipity]

Everything I've read or otherwise learned about MS says option 2 is by far the best. Doing nothing is taking a horrible chance that could have consequences for the rest of your life. MS is 'always' active, whether or not there are symptoms. Several members here had no symptoms and no treatment for a very long time, and now are having a very difficult course.

Do you happen to know if there is written confirmation that the Mayo Clinic believes that MS should not be treated for up to half the patients?

ess

[Rena705]

You and I are somewhat similar in that I was first diagnosed in 1993 with positive MRI with numerous lesions and positive LP with Oligloconal banding.

I was in remission until last July when I believe I had a relapse and MRI confirmed MS with numerous lesions however there is no way to tell if there is an increase in lesions as testing in 1993 left only a written report and both are very similar.

The difference between us is that I believe that I had a relapse last summer and my new neurologist was not present to see the symptoms and therefore does not agree that it was a relapse.  She has stated several times that my disease is inactive and therefore I do not qualify for the Disease Modifying Drugs.

After speaking to the MS Society of Canada and explaining to them the situation and the fact that my neurologist has stated that my MS is inactive they have advised me to go back to my neurologist and explain to her that MS is never inactive and in fact since the onset of the disease there has in fact been Axonal Degeneration occuring which is the direct destruction of the nerve fibre itself. This is the part of the damage that is seen on the T1 weighted images as black holes.  This is the type of damage that leads to the shrinking of the brain and the gradual accumulation of disability.

I, personally do not agree that you should go with "Option #1."  I would like to know where your doctor got his data regarding what the Mayo Clinic believes that 25-50% of MS patients do not need any drugs!!  That to me is preposterous because the Mayo clinic has no idea what damage has already occured in YOUR brain already nor do they know what the future holds.  

I believe you should go with option #2 to ensure your own neurological health.  We have no idea if there is going to be further disability but I feel that there is no reason to take a chance.

I wish you luck and just ask that you take your time when making a decision and if you can you should contact your local MS Society help group to obtain further information you can share with your family and friends and make and informed decision.

Lots of Hugs,

Rena

[jewski]

Thanks all for your comments and suggestions.  It help to hear from other who are going through the same thing.  I have another question... if there is a relapse/flareup are their any other medications other then steroids to treat the "symptoms"?  I had a terrible allergic reaction to solu-medrol yesterday, and if this is the only drug available to "treat the symptoms" then that gives me more incentive to look more closely at the available meds.

Thanks again, keep the comments coming, I am in the information gathering phase right now.

[essdipity]

Well, there are various pain meds. And spasticity meds and treatments. And anti-fatigue meds. It depends on what the symptom is, and as we all know, there can be a huge array of symptoms.

I really think you need a new neuro.

ess

[Deb61]

I'd like to chime in here, too, with going with option #2.  I was just diagnosed after several years of symptoms, myself.  I chose Copaxone and started it on Friday (so far so good).  I wish I had a diagnosis sooner to possibly prevent some of the symptoms that I think are going to be with me forever.  Also, I've gone from first gear for a very long time to fourth gear--you never know with this disease--it's so d**ned unpredictable!  Who's to say that the lesion load won't shift to a more critical area (not saying that the optic nerve area isn't pretty significant)?

Plus, another thing to consider, some drugs which have a higher success rate (Tysabri) are next to impossible to get approval from insurance companies unless you've been on one of the drugs that Gollie mentioned.  

I'm sorry you're having the ON problems.  Best wishes in getting this under control.  I see that you're having problems with the IV treatment.  I'll be praying for you--

Deb

[doublevision1]

Option #3 is certainly worth consideration as well, particularly if any of the trials offered to you will guarantee you receive meds as opposed to placebo.  One trial I was offered was to test the efficacy of combining interferon with glatiramir acetate.  So the participants would randomly get Avonex, OR Copaxone, OR Avonex AND Copaxone.  No placebo.  Unfortunately I couldn't participate due to the long distance to the research facility.  However the more people that can get involved in trials, the closer we get to better treatment and possibly a cure.  

As a research participant, one gets a LOT of monitoring and follow up; regular neuro exams, MRI's, etc.; access to knowledgeable specialists.  Also the meds are free which is great for those who might otherwise have difficulty with the cost.

Something to consider, if your personal circumstances don't preclude your participation.

db1

[Quixotic1]

Yes, there is a very vocal group of Neurologists that believe for people that appear to have a mild course in the beginning, that meds may not be appropriate.  I think they have their heads up the wrong channel.  The majority of the experts in the rest of the country do not agree with them.  Mayo Clinic does not equal medical godhood!  It does not always equal good medical care either as several of our members will attest.

I do not believe their reasoning is sound.  Yes, many people with an initially benign course go on to have little disability, but that is not always the case.  When the later disability shows up, it is too late and is irreversible.  

Here is a discussion on the "controversy."  Actually, it is a MINOR controversy, becasue the the Mayo guys don't have a lot of others on their side.

http://www.sciencedaily.com/releases/2006/05/060523225918.htm

I'll talk more about this later.

Quix

[Heather3418]

One of the things to consider is that MS is ALWAYS active, whether you are "feeling" or "seeing" evidence of it or not.  That would be my MAIN consideration for getting on one of the DMD's.

To wait for another relapse or more lesions is like flurting with trouble.  I for one, am not willing to take that risk, that the "MS may stay just the way it is."  In my case, I had the same amount of lesions for a LONG time, then suddenly, within one year I developed four more, with little or no changes in my symptoms.

Taking a chance with brain atrophy or more lesions is not an option for me.  I chose to do what I can and take one of the DMD's.  It's better than doing nothing and trusting that fate would be on your side.  This is just one person's opinion that has been diagnosed for over a decade.

I hope you make the right decision for you.....

Best Wishes,
Heather

[jewski]

Thanks to all of you for sharing your insight.  

I am slowly coming to the realization that meds might be necessary.

I was relieved when neuro gave me my choices on Tuesday - no meds, could keep this dx to myself, didn't have to tell my kids, or siblings, or friends. No shots (hate needles), good prognosis for benign course.  But the more research I do, the more that seems like putting my head in the sand, and being a Scarlett O'Hara - "I'll worry about that tomorrow".  

It is all so overwhelming.  Having been told 20 years ago that I might have it, and then never seeming to have another incident (although in hindsight, I may have had several relapses that were attributed to other things) I had come to believe that it was a misdiagnosis all those years ago.  Then to have it come back to me and be confirmed this time, its hard to wrap my head around.  

I was really hoping that I could keep this to myself (my husband and parents know, but have not shared with anyone else) and not have to explain it to my kids, and not have to see the pitty looks from friends and neighbors and being treated like a victim.  I hate it all.  If I start meds, then my "secret" is out.  But I know that is not a reason not to do it.

Keep me in your thoughts and prayers as I work through this.  I'm sure you have all been through this too.

Thanks again, and I would still welcome any additional insight as I struggle with this decision.

J

[MCBCON]

the idea of not treating the diseas because it is early and seemingly benign breaks images a little boy with his finger int the dike.  Do we stop the leak or wait till it is more than a simple leak.

What mess is left when we could have put something to stop the dike. Oh yeah, it costs to much.

[gollie]

Hi Jewski:

Just want you to know, that should you decide to treat,( I hope you do)
does not mean that you need to tell anyone that you dont want to tell.

I alway do my injections in private, even tho my family knows I have the
MS. And as far as telling your kids, you must remember that MS is not
a death sentance.  It is A imflammatory disease, that we must cope with
and keep under controle the best we can. (and that what the injections
will help with) That may be an easier way
to tell your kids about it, if you choose to do that. (just a suggestion).

Have you looked up the imformation on the 4 DMDs that I listed for
you above. they are actually very user friendy, espically the copaxone,
(shared solutions is the company that makes  it) they send a nurse to
your home to train you to do it, they also send you an auto injector.
the syringe goes inside of it, and you put it on you skin and just press
the button. you never even see the needle.  very easy.  The auto injector
and the visiting nurse, are free from the shared solution company.
they just need you doc to fax them a scrip for them.

some of the others may come with that also, but im not sure which others.
if you are strongly considering treatment. feel free to post and ask
questions about the different DMDs

let us know how you are doing.                     Gollie