which course is my MS and should I delay treatment

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civility
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Date Joined Nov 2009
Total Posts : 8
   Posted 11/10/2009 7:10 AM (GMT -6)   
i am a 36 woman who suffered from Paraesthesia on my right face just last month;but 6 months ago i had Paraesthesia on my left foot.The MRI showed 9 to 10 lesions on the white matter ,however all the other tests were normal including lumber punctre.I finished a 3 day course of IV solumedrol and all my sensory problems resolved.my neurologist said that my MS is begnin up to now and i dont need to take Disease-modifying drugs now,but should wait which course the disease will take;but another neurologist prescribed REBIFF 44 for me.Who should I choose.plz help me

Beau2006
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Date Joined Apr 2006
Total Posts : 388
   Posted 11/10/2009 12:01 PM (GMT -6)   
Well if you have been dx with MS, it is known fact now that you should start a treatment program as soon as you can.  Early start has indicated better success.....I do not think that you rneurologist has given you accurate information....none of us ever really know what course our MS is going to take, that is a guessing game for everyone.  But I also know that everyone else will agree that you should start your DMT right away....go to various MS web site, the National or the Canadian depending where u are, and you will read that what I have stated here is supported by both of these societies...
 
Gary

civility
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Date Joined Nov 2009
Total Posts : 8
   Posted 11/10/2009 12:25 PM (GMT -6)   
We do not believe that all patients
with MS or CIS should begin
indefinite treatment at the time of diagnosis.
Until it is clear that the patient
has continuing disease activity
clinically and/or radiologically, in
which case the need for treatment is
clear to the physician and to the patient,
it is advisable to observe a period
of no treatment while monitoring
for inflammatory disease activity.
The final decision about whether and
when to initiate treatment should be
shared by the patient and physician
after an unbiased review of the relevant
information with the patient.
Our current approach is predicated
on the following: (1) MS often
has a favorable natural history;
(2) disease-modifying drugs are only
partially effective in the short-term
and prevention of disability in the
long-term is unproven; (3) with prolonged
treatment, it is hard to distinguish
whether a favorable outcome
reflects a favorable natural
history or successful treatment in an
individual patient, especially if treatment
is started without a period of
observation; (4) expense, adverse effects,
and neutralizing antibodies are
a concern and patients may be reluctant
to commit to long-term parenteral
medications, especially
within the first few months following
diagnosis; and (5) prospective
clinical and magnetic resonance imaging
(MRI) monitoring may allow
identification of patients who need
treatment.

Beau2006
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Date Joined Apr 2006
Total Posts : 388
   Posted 11/10/2009 12:39 PM (GMT -6)   
it is advisable to observe a period
of no treatment while monitoring
for inflammatory disease activity.
 
From everything that has been published in the MS world, this is inaccurate information.  When I was dx with MS, my neurologist who is a MS expert, got me on a DMT right away
 
Our current approach is predicated
on the following: (1) MS often
has a favorable natural history;
(2) disease-modifying drugs are only
partially effective in the short-term
and prevention of disability in the
long-term is unproven
 
This again is incorrrect information.  MS has a favorable natural history - this is not so - thats why DMT should be administered asap so to slow the progression.  DMT are more than partially effective, there is much success with these treatments, and it has been proven over the long teerm to be very effective....Take Copaxone for instance, over a 10 year period,, 80 per cent of people taking this DMT have either improved or remained the same over this period of time - sounds pretty successful to me. Now keep in mind everyone responds differently, but it appears that the general pupulous has seen a benefit to taking this..
 
Ultimately your decision, but Ido think that you should start some kind of treatment right away
Gary

civility
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Date Joined Nov 2009
Total Posts : 8
   Posted 11/10/2009 12:49 PM (GMT -6)   
it is advisable to observe a period
of no treatment while monitoring
for inflammatory disease activity.How come that you say inaccurate while Patients with MS often do well
without any treatment. A recent
Olmsted County, Minnesota, study
found that patients with minimal or
nodisability(ExpandedDisability Status
Scale [EDSS] score2) at more
than 10 years from onset have a90%
chanceofremainingfullyambulatory
(EDSSscore3.0)10yearslater.13,18,19
This group accounted for 17% of all
patients withMSor 33.3% (28/94) of
patients with relapsing-remittingMS
in that population-based cohort.
Kurtzke et al20 reported similar findings.
Extrapolating these data to all
patients with “destined to be benign”
MSin the United States would result
in approximately 35 870 individuals
(17% of 211 000 patients withMSin
the United States) unnecessarily receiving
a potentially lifelong medication.

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/10/2009 12:53 PM (GMT -6)   
Well I am not here to argue the point, I am here to provide information. This is the information that I am providing you with.  I do not know where you are getting the source of your informaton, however it appears to me to be inaccurate with everything that I have read, been told by reliable sources...
Bottom line, your first post was one that indicated that you were looking for some direction here, which I am more than happy to provide, but it does appear that you have already decided which path you are going to take....
 
Gary

civility
New Member


Date Joined Nov 2009
Total Posts : 8
   Posted 11/10/2009 12:59 PM (GMT -6)   
MY sources are :Not Every Patient With Multiple Sclerosis
Should Be Treated at Time of Diagnosis
Sean J. Pittock, MD; Brian G. Weinshenker, MD; John H. Noseworthy, MD; Claudia F. Lucchinetti, MD;
Mark Keegan, MD; Dean M. Wingerchuk, MD; Jonathan Carter, MD;
Elizabeth Shuster, MD; Moses Rodriguez, MD

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/10/2009 1:05 PM (GMT -6)   
Well as I mentioned before, ensure that you are going to reliable sources.....just because someone has put the initials MD behind their name, does not necessarily make them reliable....reliable resources are the National MS Society, the Canadian MS Society for instance.  You can also go to MS Watch.ca and you will find a weath of information if you go the the MS magazine that describes things like the various treatments that are available, side effects, how they work, etc....and also will give u additional links to other websites to be known to be reliable......
 
Gary

civility
New Member


Date Joined Nov 2009
Total Posts : 8
   Posted 11/10/2009 1:10 PM (GMT -6)   
MS is still a mysterious disease that each group of neurologists tackle differently

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/10/2009 1:18 PM (GMT -6)   
True, but as you continue your research, the ones who specialize in MS (not all neurologist are) you will find that they are generally on the same page. Yes they may add additional drugs or treatments to DMTs, but these additions are in conjunction with the various DMTs.....
 
Gary

civility
New Member


Date Joined Nov 2009
Total Posts : 8
   Posted 11/10/2009 1:34 PM (GMT -6)   
in any case,i must wait and see what my neurologist will tell me next month;according to him, my sensory problems are suggestive of a favorable course and i have not to worry,namely that my relapses are spaced by 7 months and resolved without any minimal disability.BUT what worries most is these CONTROVERSIES IN NEUROLOGY that leave us in dilemma.My MRI showed 9 to 10 lesions ,with recent lesions when taken the injection;the biggest lesion measures 15 mm,with two centimetric lesions at the level of Protuberance.to sum up, many abnormal signals due to an evolutive MS

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/10/2009 1:45 PM (GMT -6)   
OK, ultimately it is of course your decision. As I mentioned previously, we are here for help and guidance when and where it is possible to do so....bottom line, the best recourse for u is to do research thru reliable resources, and then make a decision based on lots of lots if reliable information.

You wrote in your first post: I finished a 3 day course of IV solumedrol and all my sensory problems resolved.....the only reason that your MS is on a favorable course is due to the fact that you had a drug intervention in order to resolve the sensory problem... Believe me when I suggest that this is only a temoprary fix -

Also to state to you that your relapses are 7 months a part is just crazy talk. No one, and I mean no one can predict this for u.... you could go two years with out one, yet on the other hand you could have one after another without much time in between. Keep in mind that a relapse can last any where from 24 hours to a year.....

Again refer to the websites that I mentioned so that you get a good understanding of what MS is all about, how unpredictable it is, and how beneficial DMTs have proven to be....

Gary

civility
New Member


Date Joined Nov 2009
Total Posts : 8
   Posted 11/10/2009 2:03 PM (GMT -6)   
thanks so much;but i must tell you again that my neurologist is a researcher and well respected in this domain.one year of waiting is not much for a slow progressing disease

civility
New Member


Date Joined Nov 2009
Total Posts : 8
   Posted 11/10/2009 2:07 PM (GMT -6)   
Sean J. Pittock, MD, and colleagues (Mayo Clinic, Rochester, MN) cite the reasons for delaying treatment until the course of MS becomes more apparent in an article titled, "Not Every Patient with Multiple Sclerosis Should Be Treated at Time of Diagnosis" (Archives of Neurology 2006;63:611-614):


If left untreated, Multiple Sclerosis often runs a "favorable" course, but it becomes difficult to distinguish a favorable course from treatment success if people are treated for a long time.


The approved treatments are only partially effective in the short-term; it has not been proven that they can prevent long-term disability.


Drawbacks to treatment include the cost, adverse effects, neutralizing antibodies (immune system proteins that can interfere with the effectiveness of interferons), and some patients' reluctance to make a long-term commitment to taking injected medications.

The authors suggest that monitoring people with Multiple Sclerosis regularly with clinical examinations and MRI scans may help to identify people whose course requires treatment with disease-modifying therapies. They conclude that well-designed studies are required to determine whether early, versus delayed, treatment of relapsing MS makes a clinically meaningful difference in terms of the development of disability.

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/10/2009 2:17 PM (GMT -6)   
Your welcome......and just as a final statement, MS is not necessarily a slow progressive disease....it might start out slow, but once it gets on the track, it can gallop right before your eyes - and that is why it is improtant to get on a DMT as soon as you can - I was put on Copaxone 1 week after getting my DX......before that time - everytime I turned around, I was getting a new symptoms:
 
Blood sugar problems/double vision/electric shock sensation when I bent my head forward/tingling fingers/tingling knees/tingling lips/tingling face/heart palps/severe neck and shoulder pain from spasticity/dizziness/ongong vision problems....some if not all were happening everyday, constantly......
 
I have been on Copaxone for two years.  It takes awhile for it to kick in.....but now I can actually have symptom free days.....unless I get too tired, or too warm, then some of the symptoms surface again...
 
Would I wait a year before someone decides for u to start a DMT - not a chance!!!!  Remember that for every new symptom that pops up - there is a chance that the damage that it has caused can be permanent - my question to you and your neurologist - why wait for more to happen - to me that just does not make a bit of sense.....
 
Gary

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 11/10/2009 7:39 PM (GMT -6)   
Any doctor that tells me "MS often runs a favorable course" has lost my respect.  MS does not often run a favorable course.  MS as a benign disorder is argued by others.  Benign MS is extremely rare and it often turns into a move progressive form later.   MS is incurable and progressive.......how is that favorable? 
 
You asked for help and advice and yet you have clearly made up your mind.  If you believe that "MS often runs a favorable course", then good luck to you.


Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/11/2009 11:13 AM (GMT -6)   

Hi there Gretchen......thanks for your supporting comments on this thread......I have to agree with u completely on this one.....any neurologist that states that MS runs a favorable course (what ever that really means) and the fact that the neurologist is stating that he or she is going to defer treatment for a year to determine what course the MS is going to take is a decision that just boggles my mind.

In fact, Health Canada has recently approved the use of Copaxone for the treatment of CIS suggesting the possibility of MS. ie.....a single event like optic neuritis that does not meet the criteria for a MS dx.......so based on this and all the other things that we have learned over the years - a delayed treatment program (waiting a year) is just completely out of my scope of thinking...

Hope this post finds u well, and have a great day....

 

Gary


Dave_NC
Regular Member


Date Joined Nov 2008
Total Posts : 87
   Posted 11/16/2009 8:43 AM (GMT -6)   
An interesting article I read on this subject. You should do your own serious research on what options you have and pick what fits best for you. No two people are alike and a treatment discussion is very personal. In the end there is no wrong or right answer. Its what you think not what others think.


Doctors Finally Recognize They Need to Hold Off on MS Drugs
Posted by: Dr. Mercola

Experts are urging newly-diagnosed Multiple Sclerosis (MS) patients to take a "close observation by their doctors" approach to treatment. Patients also advised against taking medication for the first few years of the disease, according to a Mayo Clinic study.
In the past, doctors traditionally encouraged MS victims to take a proactive approach by starting prescription treatment in case of a future attack. However, the Mayo research suggests that doctors and patients could hold off for a few years in order to monitor the disease's progression.

Researchers said this is because their results indicate that the longer the duration of the disease and the lower the level of disability, the more likely patients are to remain stable and not get worse. There are cases of benign MS, one researcher said, adding this can be identified during analysis of a patient, even at the five-year mark.

Study organizers called the news a big break.

These findings will potentially impact the 17 percent of all U.S. MS patients who have benign cases of the disease. Researchers suggest that there are about 70,000 benign MS patients, assuming the total of MS patients in the United States to be 400,000.
Patients with benign MS are defined as having had the disease for 10 years or more with a low level of disability. This is measured by the Expanded Disability Status Scale (EDSS), which ranges from zero (a normal neurological exam) to 10 (death due to MS). Benign MS patients register a score of two or less because they have less than 10 percent likelihood of developing a significant disability in the future. To further clarify the scale, a score of four indicates a patient has moderate disability but is able to walk unassisted; a score of six means the patient is dependent on some type of assistive walking device, while those that need wheelchairs register a score of eight.
Researchers said benign MS patients often describe themselves as normal. However, they still can experience attacks but it is unlikely they will lead to permanent disability. One doctor said a bad attack might cause a problem, such as vision loss in one eye, but only temporarily. The symptoms seem to come and go, but most of the time there are no visible signs of the disease.
Study Results:
• Only 7 percent of MS patients who score a 2 or less will, after 10 years, progress to a greater level of disability (score of four)
• Not one of those patients needed a wheelchair, even after 20 years with the disease
• MS patients who, after 10 years, had an EDSS score of 2.5 to 4 were more likely to reach a greater level of disability
• After 20 years with MS, 12 of 21 patients in this situation registered score greater than four.

Mayo Clinic experts said that while this study confirms past data, it seriously challenges many doctors who do not believe MS can be benign. It is the common course of action to begin interferon drug therapy, with immunomodulatory medications, as soon as possible, for as long as possible, instead of observing the natural course of the disease.
Learning and living everyday to the fullest. My MS blog http://mylifewms.blogspot.com/
Learning and living everyday to the fullest. My MS blog http://mylifewms.blogspot.com/


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/16/2009 10:04 AM (GMT -6)   

Well, as per all the other posts in this thread, and the reasons as stated before, I totlaly disagree - it just does not make sense to wait to see what will happen - and in fact Im no doctor but Im willing to take a guess - the MS will continue to gain speed and become more troublesome if it is not nipped as soon as possible..

So again, I totally disagree, but then, thats just me....

 

Gary


Dave_NC
Regular Member


Date Joined Nov 2008
Total Posts : 87
   Posted 11/16/2009 10:21 AM (GMT -6)   
I am not telling anyone what they should or should not do. Each person should do their own research on their options and decide for themselves.

Getting into a huge debate here on the drugs helps no one but they are far from any type of guarantee in the first place.
Learning and living everyday to the fullest. My MS blog http://mylifewms.blogspot.com/


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/16/2009 10:45 AM (GMT -6)   
Point taken, and I agree that this is not a forum for an outright debatical, however I do have the right to express an opinion on anything that is posted here, and my opinion is that I disagree with the idea of postponing treatment, regardless if it is coming from the Mayo Clinic of not
 
Gary

becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 12/2/2009 1:54 PM (GMT -6)   
cry my neuro gave me a month(merry christmas to me) to decide what tx i'm starting. she said i've put it off long enough because the mri shows worsening, but i don't feel any different. after reading all this i'm extra indecisive.


i feel like crap i'm going to try copaxone. wish me luck

Post Edited (becky723) : 12/21/2009 6:28:25 PM (GMT-7)


lindz
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Date Joined Jan 2009
Total Posts : 6
   Posted 12/3/2009 9:35 AM (GMT -6)   

I've really enjoyed the "should I get on ms drugs" discussion.  I was diagonsed in 2000 & put on Copaxone & Avonex at the same time, 2 years later after feeling like a pin cushion stayed on Avonex until 2008 Insurance coverages I had to switch to Rebif ,I had a major adverse re-action to Rebif & stopped all med in March of 2009 also switched neuroligist .

I was always told you need to be on a DMT ,  well my new neuroligist who is the  best in this area said after taking MRI' in March & again last week & comparing them to one in 2006  said since my lesions are "old" & show no progression of Ms that I was taken off all drugs for MS .  If no new progression in 5 years the MS usually as he put it "washes out"  now the damage it has done to my nerves will always be there the disability will continue because of old damage

I go back in 6mo re-do MRI's   if the same no drug treatment   if not he is looking at the new pill treatments that he says will be out late 2010

MS is a crap shoot, do whatever you feel is right for you   This is right for me now  only time will tell what the future holds  If you like & most important trust your doctor the go with his opinion.

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