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Old 06-09-2008, 12:13 AM   #1
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Is it important to start treatment early?

Hey all! I reckon there are a lot of MS-experts on this board, and I was hoping you could help me out.
I've been sick for about a year and half, and MS is on the table as a possible reason why. I had what might have been an MS episode last November and December - where my limbs and face went slowly numb, among other things. I was at college, though, and didn't see any doctors until I already felt better. Since then, I've been feeling much better
Right now I'm just checking in periodically with my regular doctor. I had an MRI to test for MS 13 months ago, and it was clear - but after the spell of numbness, MS came back as a possibility.
Anyway! For now, we're waiting to see if the numbness comes back before I have another MRI. And I know that I might not have MS at all! Just... if it is MS, would it be important to start treatment right away? Should I be pushier about more tests, right now, or is it okay to wait it out?
Well, thanks for any advice!

 
Old 06-09-2008, 04:21 AM   #2
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Re: Is it important to start treatment early?

Sinopa, I believe this is a catch 22 decision. First of all, MS Is a progressive disease; however not everyone will progress and not everyone will wind up disabled...knowing you have MS allows you to take care of yourself in ways that you normally wouldnt. SO, finding out if you have the disease Id have to say YES it would be important to go see a Neurologist and start being tested. There is absolutely NO reason to wait on an MRI- lesions, or scar tissue will be there whether you are having an episode or not- and will start your diagnostic journey towards getting an answer.

But lets say you have MS..is it important to start treatment early? Thats where the confusion comes in. My doctors think that it is URGENTLY important to start on disease modifying drugs (like Rebif or Avonex or Copaxone) as soon as possible, in order to decrease the chances of new symtoms starting, and to minimize new activity on the MRI and to also prevent progression. That, is their purpose...but other docs may not agree. Some people here are not on any drugs for their MS and others do things completely naturally and holistically. It really is a very individual disease= no two cases are exactly alike- and that being said, its an individiual decision as well.

I found out I had MS almost 2 years ago and probably have had it much longer. I can trace "ms related incidents" back another 5 years...as soon as I was diagnosed, I started on Rebif within the month...Ive never felt better. But, again, this is me- not anyone else.

You really should see a Neuro about all this for one good reason. Many symtoms present as MS which can be something else..for instance, Lyme Disease can show up the same way as MS, many Fibro episodes are much like MS- without knowing what you are dealing with, you cannot make a decision based on facts...some of the diseases are treatable if you catch them in time and then again things like MS can come with some lousy issues, like optical neuritis, which if it happens to you, youd be much better off being prepared for.

Wish you well..
Nikki
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Old 06-09-2008, 07:26 AM   #3
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Re: Is it important to start treatment early?

I was first diagnosed in 1982 and went without meds. I still avoid meds and rarely take any medicines. When I first was diagnosed, (looking back my first symptoms would have been when I was 14-15) my doctor told me that if I wanted a life, I needed to avoid stress and listen to my body. Though 25 years later I am disabled, I still heed the advice of no stress and I listen to my body. I have learned what triggers to avoid. Each of us has triggers and many may be as unique as each of us.

Whether meds or no meds, the first think I would do is de-stress your life and determine your triggers. MS is not fatal and it is only as much of a burden as we allow it to be. Prayers are going out for you.

 
Old 06-09-2008, 08:20 AM   #4
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Re: Is it important to start treatment early?

I wish I had been checked out by a doctor much earlier than I actually was.

I was honestly scared to death of what may be happening.

I finally decided to get those answers, but I never imagined the dx process for MS would involve a year of my life feeling so miserable I could not work.

Not to mention, I had at least 4 isolated neurological incidents during that time pointing to MS (vertigo, L'hermittes, girdle band sensation and what looked like bell's palsy, but wasn't, on 1 side of my face).

I could have potentially avoided all this by getting answers and treatment early. That's how I look at it in hindsight.
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Old 06-09-2008, 09:40 AM   #5
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Re: Is it important to start treatment early?

They did a clear MRI 13 months ago, but your episode of numbness was last Nov/Dec . . .? What prompted the MRI 13 months ago? If it was something neurological, then I guess they could conclude that you have evidence of "time and space" required for the dx.

I'm surprised they didn't do another MRI in Nov/Dec.

Generally they want to see the "time and space", as well as lesions in a MRI (or O-bands from a LP). This is not NECESSARY, but it is the most common set of criteria for dx MS. If they are leaning towards MS, it sounds as though your experience to date would at least classify you as "Clinically Isolated Syndrome", or "Probable MS".

As Nikki mentioned, some neuros will treat CIS with the disease modifying drugs, and some will wait. If I were inclined to go on these meds early, I think I would be looking to have another opinion, or another MRI. Since you have recovered though, I might wait until I had ANY further indication of MS (neurological attacks) as "enhancing lesions" are often more obvious while we are in the attack. They may also be present when we are NOT in an attack, and/or T2 lesions (more permanent damage) would be obvious at any time, but the chances are greater of lesions/O-bands showing while we are in the midst of an attack . . .

The DMD's are not meant to help with symptoms, and they usually take 6 - 12 months to work effectively. They do not positively impact disease progression very much, but can reduce relapses by 30 % (on average). What that means is that any one of them might work/not work for you as an individual, and you may need to try several before you find one that does. I'm not sure how they could guage whether it is working with someone who does not have disease activity anyway . . . but statistically they have proven to be especially helpful in the very early stages of the disease.

Cherie

 
Old 06-09-2008, 10:14 AM   #6
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Re: Is it important to start treatment early?

Hi, Sinopa2. The question of using DMDs or not ("disease modifying drugs") is a very personal choice and as such, I think it's great that you're doing research on this! Some of us use them and some of us don't and in some cases, not even all doctors agree on the efficacy and statistics. (Just one of the MANY things about this disease that's very confusing!) Some people do okay without them and some seem to do better with them but unfortunately, nothing that any of us DO do or DON'T do is a guarantee. I think it really comes down to your own personal circumstances and also your belief system, which you will develop as you continue to speak to your doctors, people who have MS and do your own research.

I think that others have given you good input (and also illustrated the conundrum!). I wish you best of luck with whatever you decide. Please keep us posted!

 
Old 06-09-2008, 03:35 PM   #7
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Re: Is it important to start treatment early?

Everybody here has given you great advice. I think that for me, if I didn't have a definite diagnosis yet, I wouldn't start the DMDs just because they are so serious, for lack of a better turn. However, for me personally, my doctors and I wanted to start them as soon as possible once I was diagnosed. I just wanted to treat this aggresively, even though the drugs work only an average of 30%--I think they decrease your chances of attack and/or progression by 30%.

But there are others, like Beary, who are doing great without them. The drugs are a crapshoot, which is why I'd wait for a definite diagnosis. And if you suspect you may have MS, please get more tests, and see another doctor and an MS specialist if you haven't yet. There's just no point in waiting for years for a diagnosis if you don't have to.

I hate the doctor I had in 2004 who didn't tell me I had two lesions on my brain, he just said the MRI was fine. It may not have been enough to diagnose me, but at least I could have had the idea in my head, and I would have gotten MRIs at least once a year! Instead, I wasted three years going to the ER with weird symptoms and no answers, until I found the right doctor who knew what tests to perform. He's the one who found my old MRI, and I'm angry that I never knew!

Good luck to you! Keep the results of all your MRIs and other tests--I wish I would have asked for them, and keep us updated!
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dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 06-10-2008, 09:41 PM   #8
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Re: Is it important to start treatment early?

Hi everybody! I just wanted to say thank you for posting - I really appreciate the input! I think, given what I've heard from you all, I won't stress the drugs for the moment. I am going to press for another neuologist appointment, though - I'll let you know!

Thank you for the support I wish you all good health!

 
Old 06-12-2008, 07:51 AM   #9
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Re: Is it important to start treatment early?

Hi there,

I cannot say if starting treatment early is a good thing in all cases.
However, I can speak from my point of view and say that getting a diagnosis asap is important to me because it will help me understand why I have been having these weird symptoms and also it will do two things regarding the future:
1. get help quickly when new symptoms appear if that is required, as opposed to trying to find out what is wrong before being able to receive appropriate treatment ;
2. understand the reason why behind new symptoms appearing instead of going into a panick to the ER.

Like you I have been experiencing symptoms as of late (and also in the past) and I am pushing the docs to go to the bottom of this.

A lady I spoke to at the hospital told me she had to go through something like 10 neuros or doctors before she could get a diagnosis.

My advice would be to try to go to the bottom of this. I mean, you could also have a curable disease like Lyme that could get worst if left untreated...

Take care,

J

Quote:
Originally Posted by Sinopa2 View Post
Hey all! I reckon there are a lot of MS-experts on this board, and I was hoping you could help me out.
I've been sick for about a year and half, and MS is on the table as a possible reason why. I had what might have been an MS episode last November and December - where my limbs and face went slowly numb, among other things. I was at college, though, and didn't see any doctors until I already felt better. Since then, I've been feeling much better
Right now I'm just checking in periodically with my regular doctor. I had an MRI to test for MS 13 months ago, and it was clear - but after the spell of numbness, MS came back as a possibility.
Anyway! For now, we're waiting to see if the numbness comes back before I have another MRI. And I know that I might not have MS at all! Just... if it is MS, would it be important to start treatment right away? Should I be pushier about more tests, right now, or is it okay to wait it out?
Well, thanks for any advice!

 
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