Does MS burn itself out?

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mothermarti
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Date Joined Jul 2012
Total Posts : 5
   Posted 11/6/2014 11:24 AM (GMT -6)   
My neuro has been trying to convince me that MS "burns itself out with age." I think she bases this on my last MRI which shows no active lesions or new inflammation.

But.... I am feeling worse all the time. I have developed gastritis in the last year which she says is the cause of all the recent symptoms. I agree to a point. I also have several other autoimmune diseases like Graves, Fibromyalgia, Spondylosis, IBS etc. So it really is hard to pin which symptom on which illness sometimes.

She took me off Copaxone awhile back because it wasn't doing any good anymore and I was having reactions to the shots. But she would not suggest any of the newer meds. Says she does not want to do any more harm. Since there isn't any active stuff going on without the meds she feels I'm at a plateau.

So, does anyone know anything about this? Ever heard of it??

Bad Mojo
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Date Joined Aug 2010
Total Posts : 70
   Posted 11/6/2014 3:55 PM (GMT -6)   
Your neuro is a quack. Get a new one ASAP.

Gretchen1
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Date Joined Jan 2007
Total Posts : 3506
   Posted 11/6/2014 9:40 PM (GMT -6)   
Bad mojo, I love you!!

Mothermarti,
Mojo is correct. Everyone knows that MS is progressive. It doesn't plateau or burn out. It can, with luck and perhaps aggressive treatment, progress slowly. I would run to a new doctor. Perhaps you can find an MS specialist.

Keep us posted!
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

mothermarti
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Date Joined Jul 2012
Total Posts : 5
   Posted 11/9/2014 12:24 PM (GMT -6)   
My plan is to can this doctor ( after many years ) and find a new one. The problem is that all the neuros belong to the same clinic group so they make it hard to change. But it is possible. And I am going to do it. Thanks guys.

eat2bwell
Veteran Member


Date Joined Sep 2014
Total Posts : 534
   Posted 11/9/2014 2:28 PM (GMT -6)   
When you mention gastritis; so you are having a problem with your gut. You should address that problem with your diet. Need to look at what you are eating to figure out what is causing your gut problem. Some of the foods that cause problems with the gut are dairy, gluten, and sugar. Might try a raw fruit and vegetable diet to clear up the problem with your gut. People with MS often have problems with dairy and gluten. Healing your gut could help with your symptoms. Some people take Probiotics to help with their gut problems.

Shayad
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Date Joined Nov 2014
Total Posts : 3
   Posted 11/23/2014 12:08 PM (GMT -6)   
you should look for new neuro.

ozarker
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Date Joined Nov 2013
Total Posts : 84
   Posted 11/23/2014 4:29 PM (GMT -6)   
I actually have a referral to a new neuro in January. Thanks guys.

Gretchen1
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Date Joined Jan 2007
Total Posts : 3506
   Posted 11/23/2014 7:15 PM (GMT -6)   
Ozarker,

Good luck! Do you think you may have MS?
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

ozarker
Regular Member


Date Joined Nov 2013
Total Posts : 84
   Posted 11/28/2014 7:42 AM (GMT -6)   
Yes, I was diagnosed in 2001 after about 15 years of weird symptoms.

Gretchen1
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Date Joined Jan 2007
Total Posts : 3506
   Posted 11/28/2014 9:29 AM (GMT -6)   
I'm so confused! Are you mothermarti? Did you start this post then change your name?
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

ozarker
Regular Member


Date Joined Nov 2013
Total Posts : 84
   Posted 1/21/2015 8:57 AM (GMT -6)   
I just found this old post of mine. And I am confused too. I must have signed up a second time and used a different name, but Ozarker still comes up too. ?????

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3506
   Posted 1/21/2015 9:00 PM (GMT -6)   
Hahaha!! No worries! I was feeling a bit foolish! It's ok. You can have more than one identity. You can assign different personalities to each one!!! smilewinkgrin
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

jaminhealth
Regular Member


Date Joined Feb 2015
Total Posts : 250
   Posted 3/4/2015 6:44 PM (GMT -6)   
Burn itself out??/ MY sister struggles with MS and she is getting worse. Losing her speaking/voice and my brother tells me she cannot feed herself. I can't see her as she is EC and I'm WC and we both have issues and do not travel. We can't even talk anymore. J
OA from age 18 to late 70's....complications from hip replacement in 2010...such a terrible outcome.
Fibro dx in 1999

All all the other "stuff" most deal with....I take 95% supplements for my health care...
Grape Seed Extract and or Pycnogenol have been lifechanging for me, 20 yrs on them soon.

Love the SOM and AA Principles....

Keep it Simple, Progress Not Perfection, One Day at a Time..

zasz
Regular Member


Date Joined Feb 2015
Total Posts : 51
   Posted 3/8/2015 3:59 PM (GMT -6)   
People can go into remission, but ms never burns out, at least the recent studies have not indicated as such. only some other autoimmune does burn itself out, or is cured if the trigger is removed.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 3/9/2015 8:49 PM (GMT -6)   
If any doctor ever tells you they can predict how your disease is going to progress...RUN!!

seriouslyhoping
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Date Joined Mar 2015
Total Posts : 1
   Posted 3/15/2015 12:30 PM (GMT -6)   
I'm new but really wanted to share my experience with this "burn out" theory it is now blindly accepted in the neuro community that ms does burn out. Its also part of a fairly new belief that patients must have 9 lesions in order to have "active" MS. Those of us living with this disease and competent neurologists know this is untrue but its definitely a oroblem in the Boston area. These theories are widely accepted here and many of us have been denied both DMDs after 10 yrs but also drugs for managing existing disability and symptom management. In my case, once my neurologist retired and my Tysabri was discontinued, not only did I present with new exacerbations but the inflammation further destroyed my immune system and I now have very aggressive psoriatic arthritis. I saw 4 new neurologists who rattled of the "MS burn out theory" declared me no longer disabled and refused to treat me with any medications. Within 6 mos I had severe joint deformity in my feet and spine. My Rheumotologist was reluctant to formally dx the PsA. When I asked why he stated , "Sadly thete is little I csn do to help you. I can't give you a biologic because of your history of MS which is ironic because your untreated MS most likely caused you to manifest a very aggressive secondary autoimmune condition". I susoect this is going to happen to a lot of us if our treatments are stopped.

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 3/16/2015 5:37 PM (GMT -6)   
Have you considered talking to a lawyer regarding your legal actions? I would think that any medical entity or health insurance entity that declared you "cured" and stopped treatment--only to see further health deterioration--would be liable for damages.

ozarker
Regular Member


Date Joined Nov 2013
Total Posts : 84
   Posted 3/18/2015 12:18 PM (GMT -6)   
Thank you all so much. I had serious doubts about MS "burning itself out".

I think my neuro withdrew Copaxone because of the weird reactions I was having regularly. And she told me she did not want to do any more harm by trying other meds since I am kind of sensitive to them. I don't think she is being negligent.... just trying to make me comfortable.

That being said, I still do NOT believe MS will ever burn itself out. Sure I'm getting older and things are not working like they should. But I know the MS is making everything else seem worse. I've probably been in several relapses over the years but did not recognize them as relapses. Just thought I was a mess from osteoarthritis, spondylosis, tenonitis etc. Everything has hit me at once.

I am scheduled to see a new neuro next month. This one I have now specializes in strokes.. NOT MS! I hope to get some better answers this time around. In my 14 years with MS I've only had one good doctor and she HAS MS herself. In fact, she had to retire due to her condition. What a terrible loss to her patients!

Now, speaking of relapses... I've always had to kind of classify my own relapses. This current neuro would never put a name to what I was going through. I think she might have done it once. In fact she thought I had Relapsing/Progressive MS. I think that's the term. But she changed her mind somewhere along the way.

It looks like we are all on our own with this. No two doctors ever agree.

Bad Mojo
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Date Joined Aug 2010
Total Posts : 70
   Posted 3/18/2015 10:34 PM (GMT -6)   
I've had many neuros over the years and the one that was the best was the youngest of them all. MS is still not well understood. Hardly any MS patients have the exact same symptoms--so it is hard for anyone to be considered an expert in such a wide varying disease. Even a nuero that has treated over 1,000 MS patients has likely only experienced a small fraction of all the possible symptoms and their varying degrees. New MS drugs are being tested every month.

Some of my neuros have said I have relapsing-remitting, others have classified me as secondary-progressive. But none of them have ever mentioned anything about MS "burning itself out". EVERY neuro I have had has firmly believed that early and continuous treatment is best. I had to switch from Copaxone to Tysabri because the Copaxone did not work for me. The Tysabri has been working well for 3+ years. Everyone responds to treatments differently--so you may have to switch treatments more than once--but stopping treatment altogether seems rather shortsighted to me. But only you can decide what is best for you. Just be sure to get plenty of opinions.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3506
   Posted 3/19/2015 8:02 PM (GMT -6)   
Great response, Mojo. Sharing your experiences is so helpful! Thank you!!
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 3/24/2015 1:03 PM (GMT -6)   
The problem with a lot of doctors is that they dont venture outside the box and many have the attitude of heres the treatments available to you, live with it.

The way I look at it is we don't just contract Multiple Sclerosis. Ive come to my own conclusion that there is something in our lives ( disease, virus' , bacteria, fungus/mold) that was present in our bodies long before it ever presented itself as to what we know as Multiple Sclerosis. Its the progression over time of this underlying problem that triggers an auto immune reaction. Many people that have MS have a high count of Candida in their blood. Many people with MS also have leaky gut. Are these two related? Quite a few people have had success with over coming symptoms with a change in nutrition by following a strict diet. All these people are doing is getting the proper nutrients their bodies need and in return the Candida is controlled, Leaky Gut is healed and symptoms subside. Coincidence? Could this be where the problem originally manifests itself from? None the less, MS doesnt just "burn itself out" and go away on its on. I do believe critical lifestyle changes must be made if there is any hope in repairing the damage that has been done by an underlying condition.

eat2bwell
Veteran Member


Date Joined Sep 2014
Total Posts : 534
   Posted 3/25/2015 7:03 AM (GMT -6)   
Dr. Swank started treating MS patients back in the 50's. His treatment consist of diet. He did not use the drugs. If you do not have access to the drugs you might look at his diet. He had good results with the patience he treated.

cherie659
New Member


Date Joined Mar 2015
Total Posts : 2
   Posted 3/29/2015 1:01 PM (GMT -6)   
For what it's worth here's my take. Can MS "burn itself out"...No. Can MS "plateau"...Yes. Is MS "always progressive"...No. Am I or could I be "wrong"...absolutely!

Whether or not your MS progresses has nothing to do with whether you have active lesions or not. Not everyone with active MS lesions will progress badly just as not everyone with non-active MS lesions will not progress. Someone with relatively few lesions can present with more issues than the one with a multitude of lesions. Positioning of the lesions plays a huge role in one's outcome. I have several lesions and am scooter dependent. Yet my cousin has a multitude of lesions and after 36 yrs of MS is still able to walk etc.

I am also a big believer that MS is not only your genetic DNA but environmental as well. One needs both to interact with each other. Scenario...you have 3 siblings with 2 of them being twins. One sibling & 1 twin have MS while the 2nd twin does not. Why? I have MS yet my 9 brothers & sisters don't. Why?

Does diet play a role...I doubt it. But then we all know a healthy diet is always beneficial to ones overall well being. Could allergies play a role...possibly. What about vitamin deficiencies? I know when my vitamin D, B12 & potassium levels are low my MS symptoms are more pronounced.

So here's the bottom line...MS is an unpredictable...indiscriminate disease that holds no boundaries. It's a MonSter that will suck the life right of you if you allow it.
Cherie
Diagnosed w/MS 1994
http://forums.delphiforums.com/themsshuffle/start
~*I Hope You Dance*~

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 3/29/2015 8:17 PM (GMT -6)   
I agree Cherie. When I was first diagnosed, I had over 40 lesions, but I was an extremely physically fit person. The AF let me stay in the service after my diagnosis--because I was still running circles around the 20-year olds. It wasn't until I had a lesion that formed on my brainstem that I experienced serious and lingering issues--then the AF did medically retire me. Long story short, location of the lesion(s) is the key, quantity means nothing.

I also agree MS is likely caused by a combination of issues; most predominantly genetics, but I think environment plays a role too.

I doubt diet causes MS--and I doubt it can cure it (even though there have been some promising results from some diets). But as eat2bwell and you point out, a healthy diet will improve anyone's quality of life, whether you have MS or not--so why not follow one?

scottq60
New Member


Date Joined May 2015
Total Posts : 1
   Posted 5/25/2015 8:15 AM (GMT -6)   
I'm going through this now....my Neurologist at VA in Lexington, has been following me for the last 3+ years...last time he saw me to discuss my annual MRI results, he told my wife and me that maybe 5 out of every 1000 MS patients may experience this "burnout" of the disease. I'm skeptical but agreed to stop my Betaseron injections after nearly 9 years of faithfully sticking myself every other night. I stopped the injections in May and will retake my MRIs (brain/C-spine) in September, unless I relapse before then. I was formally diagnosed in May of 2006 but later studies of my medical records revealed that my first exacerabation was probably 10 years prior. I've been VERY blessed that my MS has been extremely slow to progress. The only symptom I have currently is what I consider excessive lack of energy, but I'm nearing 55 y/o, so that could be a contributing factor and the fact that I work my 80 hours in 6 days so I get the following 8 days off every pay period - so basically work a week/off a week.

Anyhow, thought I'd research this "MS burnout" theory and I stumbled upon this forum...so thanks for being here! :)
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