Can You Can Have MS without MRI Lesions?

[Quixotic1]

I know we have covered this before, and I really should spend more time on the National MS Society site, but this is a quote from the NMSS Sourcebook on MRI's.  It says everything so much more succinctly than I do when I'm "winging it."

"Diagnosis
Because MRI is particularly useful in detecting central nervous system demyelination, it is a powerful tool in helping to establish the diagnosis of MS. It should be remembered, however, that approximately 5% of patients with clinically definite MS do not show lesions on MRI, and the absence of demyelination on MRI does not rule out MS. Also, since many lesions seen on MRI may be in so-called "silent" areas of the brain, it is not always possible to make a specific correlation between what is seen on the MRI scan and the patient's clinical signs and symptoms. In addition, with advancing age (probably over age 50), there are often small areas seen on MRI in healthy people that resemble MS but are actually related to the aging process, and are of no clinical significance."

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIB_sourcebook_mri

Guys, not to restate the obvious but this is 1 out of every 20!!!  I'll keep looking, but even my MS Neuro, whom I consider very smart, felt that MS was ruled out by normal MRI's.  I need to understand whether the 5% got diagnosed because they presented so classically - maybe with Optic Neuritis, more than one clear attack, a very positive LP, and a tatoo on their forehead that says, "I have MS!"

Quix

[micmol]

I am newly diagnosed (2 months) with primary progressive MS.  My MRI showed areas that are now void or fliud filled.  They were refered to as "retired leasions" . Have you heard of this?  I am 58.  

[micmol]

I am newly diagnosed (2 months) with primary progressive MS.  My MRI showed areas that are now void or fliud filled.  They were refered to as "retired leasions" . Have you heard of this?  I am 58.  

[micmol]

I am newly diagnosed (2 months) with primary progressive MS.  My MRI showed areas that are now void or fliud filled.  They were refered to as "retired leasions" . Have you heard of this?  I am 58.  

[Andipw3]

Hello all..
Thank you for such detailed and quick responses. Yes.. I'm absolutely hoovering  info. Like crazy. It's very difficult because I seem to be on the mild side of this. I wonder.. Can I progress very slowly with no real big changes? Is there such a thing? Have any of you read " wheelchairkamikaze.com"?  He is a blogger I think. He was speaking of a new drug  Tecfidera. I see that's what you are on essdipidy.. Seems the least of side effects.
But back to some thoughts on diet. My husbands friend is a man with ms. He was bed ridden with all the awful effects. Such as loss of bowels, not walking, ect ect. About 2 yrs. He changed his diet and is now walking, riding bikes, and seems to me really healthy with no relapses. I THINK he was taking Meds but not feeking they were working. So with just an increase in vitamin D ect and diet much like the paleo diet, he's doing so much better and is i
Off all meds.
Ann Romney. Another case. She was taking meds but because of the awful side effects, she stopped and is using alternative therapies of a natural course. Reflexology, acupuncture, equine therapy, diet...( article on healthline)
This is so awful to me because I think in literal terms. This disease seems to have no exacts. Maybe/ maybe not..
There are more indications of diet related stories on YouTube. Doesn't it make sense if we eat foods that reduce inflamation it can at least slow progression/damage. Arent the drugs saying the same thing? Won't cure.. But will help slow it down.. 2 camps saying the same thing??
And I thought only spine lesions cause certain symptoms.  Apparently not.
I'm not very " Techy" but I'll try your suggestion copy/paste to a new thread. I so appreciate the advise/help!!!

[supermum_ms]

Hi Andrea and welcome to our little MS community,

I'm sorry but quix hasn't been active on Medhelp for a number of years, so it's unlikely she will be able to respond to your questions.....

I am sorry for the reason behind you finding your way here, it's a club no one wants to be a member of *Hugs* I feel the need to address your aversion to the disease modifying drugs (DMD's) and clear up any misconceptions you may be having.

Firstly try to get out of you head, any ideas of doctors being pro meds because they are doctors, the actual reason MS neuro's are prescribing DMD's is simply because of the decades of MS research that unquestionably supports treating the disease reduces the number of relapses, disability rates, quality of life etc

You only need to look at MS research of 20+ years ago to understand why DMD's are better than doing nothing, before DMD's became standard treatment MSers had higher disability rates, poorer quality of life etc etc and today's MSers lives are chalk and cheese in comparison. DMD's are the very thing that directly effects the course of the disease, DMD's pro-actively provide long term and positive outcomes for today's MSers.....

I often feel it can be extremely difficult to accept DMD's, if your symptoms have only been mild or non disabling when diagnosed with MS. Its scary to be considering DMD's, to basically try to prevent becoming disabled when you haven't the personal experience of truly understanding what MS specifically mean to you 10, 15, 20 years from now. I am admittedly pro DMD's and i fully believe in being proactive, and that means utilising all the various disease and symptom treatments options you have available to you, the alternative is simply gambling 'it won't happen to you' with odds already established to not be in your favour.    

Unfortunately there is no scientific evidence to prove that any of the diets, vitamin/herbal programs, stress or exercise programs will directly alter or positively effect the disease its self. There are thousands of 'cure' stories out there but they can't actually be true despite what they claim, they just can't of had MS to begin with for the 'cure' to of worked.

Reducing stress, taking Vit D and being involved in an appropriate exercise or physiotherapy program have all been researched and proven to be very beneficial to people with MS but keep in mind, that they still won't slow down your MS or prevent disability. It's always your choice in what you do or don't but why not start out doing both the recommended DMD and the alternatives, be as proactive as possible now and save making the decision to not do a DMD when you've had time and experience to make a more informed choice with no regrets.

Hugs...........JJ

[essdipity]

Hi. Quix has not been active here for some years, so I doubt she'll see your post.

I do have some comments, though. I believe you really need to study up on MS, and there's a lot to know, a lot to read. But it's your health you're. dealing with, so it's worth all the effort you put into it. I suggest you start with the web site of the National MS Society for accurate, clear information. 'Sister' sites in Canada, the UK, Australia and other countries also provide facts you can count on to be true. There are also other web sites maintained by highly regarded medical and research organizations that will not steer you wrong.

These are in contrast to sites that claim cures, are not backed with scientific data, consist merely of anecdotes, or are trying to sell you something. Avoid those like the plague--they're bogus.

Eating well, exercising to the extent you can, and generally sticking to good health habits are always recommended, for MSers and everyone else. Beyond this, there are no 'natural' remedies or diets that have been demonstrated to affect MS. None. No foods to avoid, no herbs to take, etc. There is simply no data to suggest this. If there were, all MSers would go that route.

As to the various MS treatments, there are now 11 to choose among. The earliest ones were all injectable, and carried the possibility of side effects. Not everyone experienced these, however, and there are ways to minimize them for the vast majority of patients. Now there are several meds in pill form. I'm on one, Tecfidera. I had a rough break-in period (some stomach issues), but when my system got used to it, things were fine. I now have zero side effects from Tec. If I did have intolerable effects, though, I'd switch to one of the many others.

There's absolutely no reason to be 'terrified' at the thought of MS meds. What is much more terrifying is the harm MS can do. Personally I'm willing to do a lot to minimize my chances of becoming severely incapacitated. No guarantees, but I go with the data that proves these meds help. Just because one's symptoms are mild now does not mean that a catastrophic event will not occur at any time. That could still happen to me, but at least I will have done my best to prevent it. That's all I can do.

As to your question about the brain controlling arms and legs---Well, yes, it plays a big role, if not the only role. I have a brain full of lesions, with none ever identified in my spine, yet I have muscle weakness, brisk reflexes, bladder issues, sensory problems, etc., mostly in my right leg, but elsewhere too. My neuro says my brain has caused all of his.

Once again, I urge you to get the real facts about MS and its treatment. Then you will be in a position to make informed decisions that will affect the rest of your life.

ess