Is it possible to "grow out" of MS?

[nancy99n]

Is it possible to "grow out"  of MS?  Just had a check up with my neurologist and he said that MS was a "young adult" disease and that all the progression occurs in the 30's and 40's.  I had optic neuritis at 36 in 1998 and was diagnosed with relapsing-remitting MS.  In 2003 I had my second symptom, numbness in the legs and went on Copaxone.  My neurologist said I could decide when to go off of Copaxone -- maybe at 55 (I am now 48), since I all of my MRIs have been exactly the same since 2003.  In December 2008 I got Trigeminal Neuralgia in the left upper and lower jaw.  I am concerned about his statement about "growing out" of MS, because I have never heard such a hypothesis before.  I have no disability from MS and I don't want to have to deal with any in the future.  Do people really go off of the MS drugs at a certain age?

[figuerpa]

I am pretty sure once you have MS you always have MS and as far as your MRI's not changing that is probably due to the Copaxone, that is what it is for is to slow the progression of MS. And as far as MS being a "young adult" disease, that is the biggest load of crap I have ever heard. Alot of people get diagnosed in their 50's and up.

My advice would be to find a new neuro who knows what he is talking about. Unless he is doubting his diagnosis of MS and just doesnt' want to admit he was wrong in the first place.

Good luck,
Paula

[Audrey_M]

In the spring, someone asked at what age were you dx'd with MS?

http://www.medhelp.org/posts/Multiple-Sclerosis/At-what-age-did-you-receive-your-MS-Diagnosis/show/1246903

You'll see a broad spectrum of ages, and also notice that many of those who were diagnosed in their late 40's and up mention that sx probably started years earlier. They also still are symptomatic. Some did not develop symptoms until later in life.

I would be very concerned about a DR who says one can "grow out of MS". It show a complete lack of understanding of the disease, which is an inflammatory disease of the brain and/or spinal cord that prevents the CNS from transmitting signals properly. While some areas of damage may repair themselves, the process is an ongoing one.

So many times people are quick to say "Find another doctor", but in this case I'm jumping at it.

Audrey

[Siddy1]

I just wish that statement were true and that I would "grow out of it".  I only had two significant symptoms in 44 years. I was dxed at the age of 65 (5 years ago) although they think I have had MS since I was 21 (it was not diagnosed as MS back then).  

So even though I had one primary incident at AGE 21, I  was relatively symptom free for 44 years.  The two things that stand out during that 44 years were that I had ON at age 45 after my dad died, and a severe bout of TMJ after my mum died at age 58.  The stress connection is also very evident. Both of those incidents were not connected to or dxed as part of MS at the time.

My physical symptoms didn't begin until I was 65 and started with a mild weakness on my left side arm and leg.   I am now unable to stand for more than a few minutes and can take only a few steps. I cannot lift my left arm.

In retrospect, my two Neurologists were spot on with their dx 5 years ago when they both agreed that I had SPMS and would end up in a wheelchair. They were hoping for a slow progression because of the two symptoms over  44 years.  I think progress has been relatively fast going from physically fit to where I am now 5 years later, with no remissions.

Marcie

[Siddy1]

I said TMJ but I meant Trigeminal Neuralgia. Marcie

[janine01]

That is so untrue. I was diagnosed a year ago at age 49. Two small lesions in the mri and now too numerous to count. Copaxone has finally stabalized them. Almost no symptoms, at least nothing unbearable. LP also positive. Everything else ruled out.
Your doctor sounds like a quack.I also agree with Audrey M. Find a new doc.

[Sumanadevii]

Is this a trick question?
Geeeezzzzzzz....what is this neuro thinking?

Wait, I know.  NOT THINKING

[Lulu54]

No, no, no... and no!!! What an idiot , who must have slept through that class.  

You absolutely do not grow out of MS - what we do know is  the majority of  most people with MS will transition from RRMS to Secondary Progressive  MS  in 10-20 years after disease onset.

This is NOT outgrowing the MS, it is just transitioning to a different way the disease presents.

The whole point of taking a DMD is to slow or halt the progression of the disease (but it isn't a cure!)  perhaps what you are seeing is your therapy has been successful? That is what we all hope for everytime we inject the drug of choice. But again, this is not a cure.

No, You do not go off a drug at a certain age. What the Heck is this neuro thinking?  Obviously this person is not schooled in MS and isn't an MSologist.

I am now going to go scream in a different corner of the room - that's what I want to do every time I read these  idiotic statements that even I know are wrong, wrong , wrong.  I'm sorry you have a duffus for a neuro - the doctor may be a nice person but you need to find another one who understands MS.

be well, Lulu

[Quixotic1]

Well.......Lulu spoke my thoughts and she and I screamed in unison at the idiocy that you were told.  Run and run fast from this neurologist.  MS continues to progress thoughout life in most people.  About 12% to 15% never see real progression in their lives.  Often after about 20 years the disability grows much more rapidly.

We have no information that one can safely go of their medication at a certain age and be okay without it.  We have only had the meds for about 20 years.  Several people here have stopped their meds for whatever reason and seen their disease shift into high gear.

Your neuro is a dufus who does not understand the natural course of MS.  Please distance yourself from him.

I had my first symptoms at 47 with intractable vertigo.  Then at 52 had a single very disabling symptom.  I was diagnosed at age 55 and have continued to see slow progression.

Please stay here and learn some of the facts about the disease.  We rely heavily on the medical literature and on evidence - based information here, trying hard to correct the misunderstandings that so many neurologists have.

Welcome!

Quix, MD (a physician with MS)

[janbubears]

is the neurologist on drugs !!!!!  ha ha ha xx

jan x

[supermum_ms]

Hi nancy,

I told my dh about out growing MS, he laughed so hard, and he knows next to nothing about MS but even he knows thats a lier lier pants on fire comment!

Cheers......JJ

PS welcome :-)

[HVAC]

I had my first neurological symptoms as a young child and then a very slow progression until the disease became noticeable in my 40's. Now at 47 it is starting to progress more and more rapidly.

Remission is not a true remission the disease is still there.

Alex

[nancy99n]

To everyone who responded:

Thanks for all your input!  My neuro was no help when I was diagnosed with TN [in fact he was rude!], but luckily referred me to a great Facial Pain Specialist.  My facial pain doc has made comments about my neuro -- not exactly negative -- (one doc won't bad mouth another) -- but he got me thinking about changing neuros.  Unfortunately, my neuro was holding my Copaxone prescription hostage -- and I had to do an office visit to get a year's prescription yesterday.  

I have requested my patient records and will be looking for a new neuro.  I just was so tired of doctor visits (took me a year and a half and three surgeries to get rid of the TN pain), that I'm just not in the mood to do interview neuros right this minute.

When he made this outrageous statement yesterday it just confirmed my decision to move on.

As much as I hate daily injections, I knew in my heart he must be having neurological problems of his own to have made such a statement.

Thanks again for your input!
Nancy