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

[Msconfusion_77]

This is me too ! I had the optical neuritis as well and I had ONE neuro tell me that I had it , he found that I had optical neuritis and upon my office visit noticed my gait upon many other things as I had visited him in the months to come . However my MRI's showed nothing . All tests seemed inconclusive. But he was a well known MS expert and without a doubt was sure that this indeed was MS . I also was diagnosed prior at an army base a prior year ( they were unsure of a " relapse " that I had where I was completely paralyzed and weak from the neck down . I suffered tremors from the heat after grocery shopping and dropped all my food after trying to lift my foot over the threshold of my home) they concluded this due to pain in my legs and my back because I , at the time was having arthitic pain in my lower back , which they said was causing possible ( they didnt know more about Fibro then either by the way , it was " an all in your head type thing" back then ) pinched nerves possible and it was being over stimulated in my brain and causing me to think my whole body was in shut down mode and I couldnt move.
HA!! right.
I spent two weeks being bathed , clothed .. not being able to drive and yes even being able to lift my feet over a threshold of a door , they sent me to a pain specialist where they injected my back full of steriods , beta blockers , cortisone ... it was a mess.
But back to what I was saying , when I went back to Maine from where I am now ( back in the same situation... ) The doctor there took me seriously and found the optical neurits reported it , put me on rebif . The rebif was scary and it made me feel worse the next day . I did take myself off. I had two babies I had to take care of and the day after taking the shot I felt horrible I could  take care of my motherly duties.
fast forward now , I am back on a base where I am being told again , it is in my head , so to speak .... they will not EVEN look at the paper work from my speicalist in Maine . The poor man who listened to me and treated me like a person , passed away.
so now I am stuck in limbo and now my newest threat from this disease has taken away my speech. I sound like I am drunk most days. I slur and I pause before I talk. my lips are are left alomost like they have no muscle in them and my tongue flops around in my mouth . I am actively searching for someone that will take the time with me . ... and that has good bed side manner.
The doctor as San Antonio Medical , told me It was a mental conditon. He told me that I needed to get off Tramadol for my back and my legs. WHich was very funny , because after that I explained that I just had my back operated on .
I had 6 , four inch screws put in my back and a 7 inch rod put in my back . I was told by the service that I only had arthitiis . That tramadol , was the least amount offered to me by the gentlemen OUTSIDE of the service that I had a second opinion do my back. That if I didnt have my back done that the effects of my back could have left me hunched over by the age of 70 and that the leg pain ( not the numbness and buzzing ) but the stabbing and throbbing had been caused by bone on bone from my vertebrea and the nerves that were almost severed .
What I am saying to all of you ,  DO NOT take on physicians advice , do not let on Doctor tell you that THIS is what it is . Do not let them make you believe it is in your head . IT is your body and you know when something is wrong . You just do . Your family KNOWS you .... let them go to the office meetins with you , dont go it alone. I tried to be tough and do it all by myself. I didnt want to be burden , I felt like I was enough of one at home. I honestly have had enough . Our  bodies are all so unique and different and not all wave "hello , this is whats wrong with me !" on tests . Each day and every hour doctors are learning ... they are being presented with new machines and new ways to find things and interpert tests . The brain , The body and all these autoimmune diseases are soo complex . I believe when a doctor truly doesnt know what the answer is , the best answer is : its your emotions , causing you to believe you are ill . You are coaxing your body into a state of physical illness.
It is wrong. It is wrong when there is NOTHING going on in that persons life to say that to them . If they were eratic and losing their home , their wife/ husband had drinking issues .. mental issues ... its a possibility .  
I had postpartum with my son . My son is 12 .
Only stressor I have and still have is when I have something take over my body I cant control . BUT only then is WHEN I stress . I am sure that this has hit home with many of you .

[HVAC]

I am sorry for your symptoms. Sometimes it can take time to figure out what is going on. Neurologists like to study thing themselves. They want to see for themselves if symptoms change or stay the same. Many of us were sent to different doctors. It took me two years and a few neurologists to get a diagnosis.

Also it helps us if you break up your writing. We have eye preoblems.

Alex

[Ramstl]

Hi Quixotic1

Thanks for your thorough explanation of MS. I have been having some weird sensations for the past year or so. It all started after a very stressful month of  program releases(I am an IT guy). We went to Barnes and Nobles one day and felt a sense of Vertigo and some sort of confusion. I thought i was having a heart racing affair ended up in ER and they did a blood test and EKG and then let me go home. MS was a distant thought for me at that time. But the vertigo, muscle twitches and funny foot sensations kept continuing. I got checked out by Optician,Heart specialist, ENT for BPPV all in the attempt to find the source of Vertigo. ENT also referred me to a Brain MRI with contrast. They found no lesions but that does not stop my erratic twitching or the blurry vision on the left eye that required me to wear glasses. Now to think about it..it may have been caused by MS. Now waiting to see a Neurologist. I am simply freaked out and mentally tired at this point. Hope find the real thing and start a treatment.

[Ramstl]

Hi Quixotic1

Thanks for your thorough explanation of MS. I have been having some weird sensations for the past year or so. It all started after a very stressful month of  program releases(I am an IT guy). We went to Barnes and Nobles one day and felt a sense of Vertigo and some sort of confusion. I thought i was having a heart racing affair ended up in ER and they did a blood test and EKG and then let me go home. MS was a distant thought for me at that time. But the vertigo, muscle twitches and funny foot sensations kept continuing. I got checked out by Optician,Heart specialist, ENT for BPPV all in the attempt to find the source of Vertigo. ENT also referred me to a Brain MRI with contrast. They found no lesions but that does not stop my erratic twitching or the blurry vision on the left eye that required me to wear glasses. Now to think about it..it may have been caused by MS. Now waiting to see a Neurologist. I am simply freaked out and mentally tired at this point. Hope find the real thing and start a treatment.

[Msconfusion_77]

I have had the same issues . I have had the optical neuritis and gone a few days with slurred speech . I have had stinging and the buzzing feeling in my legs. A mild gait . I am always falling and the heat will have me disoriented to the point where if I do not get into a/c I will pass out and repeat weird and odd sentences over and over and temor.
I was diagnosed with MS . When I moved to a military base they refused to keep the diagnosis that my former neuro gave me and said I had fibromyaligia . I went one whole week with complete paralysis and my husband had to bath and dress me .
None of my MRI have shown lesions or other tests have proved MS , my previous neuro who also is a well known Doctor insists it is.
May I ask what state you live in. Who you Doctor is . I am desperate for someone that understands me. I am on disability FOR MS.
Thank you !

[HVAC]

I have heard of black holes from old lesions. That would be common in PPMS. I have PPMS and have them.

Alex

[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

[immisceo]

Hi Andi! This is a very old thread. Quix isn't very active in the community anymore (though as you state, her wisdom and helpfulness are still VERY apparent here). It's very possible that you will get more response if you copy and paste exactly what you've written here as a brand new thread/question.

First of all, I'm sorry you've joined our club. The time immediately post-diagnosis is frenetic and not a time I personally look back on with any fondness. But it gets better! You're probably absolutely hoovering up information right now, and it can take a while to be able to discern the good from the bad, the trustworthy from the bunk.

To that end, a healthy diet is a great thing for anyone with MS. In fact, it's a great thing for anyone period. However, there is zero evidence that it will alter the disease course itself. Stress-reduction, exercise, eating right... these are all wonderful and things we should all aim for in the interest of our overall well-being. But again, none of the above will change the course of the disease.

The use of disease modifying drugs is a highly personal choice, but one best made on factual information not fear. All drugs have side effects. If a drug has an effect, it will have a potential side-effect. In the interest of patient information, all side-effects reported prior to a drug's approval must be listed. This can provide a very skewed image of what the side effects will be for the average person.

There are over 10 approved DMDs, along with drugs currently being trialled, and a couple of off-label options that are evidence and science-based. In other words, a patient is not stuck with one they try and don't respond well to.

I guess it comes down to a gamble. Do you bet that a drug's theoretical side effects are worse than the disease continuing unchecked. It's probably already obvious, but I quickly opted for combating my MS after I was diagnosed 4.5 years ago. Whatever my disease looks like in 10 years, I won't have to live with any 'if only I'd...'

[Andipw3]

Hi,
My name is andrea. In my research I see you on many threads. You seem very informed and helpful.
I was just diagnosed with MS a couple of days ago. I'm still trying to let it resignate.
I seem to be on the mild side of things. I'm no stranger to headaches/ hormonal migraines. What set things off was that in addition to a case of optical neuritis, fatigue, sometimes my toes curling, occasional twitches, light headedness.
I'm not one to run to the doc whenever I don't feel well, but this seemed different and I felt something was going on. I was under a lot of stress with a funeral, and tried to push it off to stress. However , the suggestion of an MRI was given by my Opthomologist. So.. I did. Through my GP. Showed "scattered lesions" and I think demylation . One lesion enhanced.So off I went to an MS neurologist.
I have a dr.  as a MS neurologist . Excellent credentials. He ran Another brain MRI with the spinal MRI. Using the T3 . Compared 1 st MRI of the brain. Showed an additional ( albeit small) enhanced lesion. Spinal was negative.
First of all.. Could it be anything else? (Prob not. ) What terrifies me are the meds. I can't do it. It gives me such anxiety to put such brutal drugs in me that have such awful side effects. I feel fine except occasionally fatigued.  I just today noticed a little numbness in my right finger. But pretty much gone now?! Weird since I don't have spinal lesions right? The brain doesn't control the arms/ legs/ torso? Being things are so mild, and I'm turning 46 this year,
I want to manage this with a paleo type diet/ vitamins/ excercise/ stress reduction. Isn't it possible with reducing food items that can cause inflamation prevent progression as well? Has there been any success stories with a more natural approach?
I'm really struggling and I meet with the neurologist in 2 weeks. He of course wants to treat. He's very sweet, but I know he's pro drugs. Like most doctors.
Any advise?
Thx so much.
- andi

[Alleybolton]

Hi there

I wondered if anyone can help me I've been diagnosed with optic neuritis with Holmes adie pupil and vermiform iris.   I have been having pain in my eye, blurring, black spots and going partially blind...dizzy spells, fainting episodes headaches and nausea. My pmh includes IBS and ?TiA as I had numbness and tingling in my hands arms and face. I am waiting on an appointment with an eye surgeon, but the symptoms are just getting worse, if I go to the hospital they just send me home again....not sure what to do!

Any advise would be greatly appreciated

[lfileccia]

I have been having symptoms now for about a year.  I have legs burning, tingling, back pain (hugs) like someone is squeezing the air out from me from my back.  I have nerve damage from my toes to my finger tips, I was told I have O.N in my left eye but today was told by another doctor that I don't but something is wrong with me and they just don't know what it is.  standing still I topple over, walking I trip, I can't think straight, I'm forgetting so much, and my vision is decreasing quickly.  I work at a hospital and am finding it difficult to perform my duties!  I have a uncle and cousin whom have MS, my MRI on brain and spine came back negative, had a nerve conduction test, not peripheral, so its sensorial, blood work came back all ok..I want a spinal tap but my neurologist doesn't think anything is wrong!  Im loosing my mind...thanks for listening-Lauri

[Dstein62]

My husband started having weakness and numbness in his left leg and left arm then gets lightheaded like he is going to pass out last for about 15min then he is ok again then has another spell off and on. He has like 4 or 5 spells a day for a few days then none for a couple days then more spells again. He has had all work ups and not heart related. He just had a Mri but looked normal only one small 3milameter spot on left side so dr said not ms but is referring us to neurologist have to wait 6 weeks to get in. These spells are hard to work in factory with. Just worried

[SarahL2491]

If you have previous MRIs, the hospital where they were done would have copies.  

[KF4ZNL]

My wife was diagnosed in 2005 her doctor died in 07. the records are nowhere to be found.  Here's our problem, she had a major exasperation in August and could not walk unassisted so I took her to Piedmont Hospital in Atlanta. The MS doctor on call ( he has a MS Center a couple of miles away)  gave her five days of Solu-Medrol treatments and her vision got better then was transferred  to Shepherd MS clinic next door after 20 days of rehabilitation she is now in a power wheelchair.   When we went back for a follow up it seemed like the director of the ms clinic at Shepherd  dismissed her saying he could not say it was ms related because her mri showed no lesions.

[Twilight823]

Who was your neuro?   My MRI only shows two small white spots and no lesions on the spine.  Yet I have burning leg pain, Right eye pain all the time at a level 4-5 and sporadic rib pain that sends me into tears.  I need to see someone that understands this and not just want the typical symptoms to make their job easier.

[immisceo]

It doesn't sound like MS would be the most likely candidate for what you're going through, and I'm so sorry you haven't found relief in the medications you're on.

Did your doctor speak with you about your cervical spine issues and if the sensations you're experiencing are characteristic of those protrusions? Have you seen a rheumatologist? (as you mention a lot of joint pain and a firbo diagnosis in the past). I'm thinking shingles could account for the polyneuropathy, perhaps.

If you start a new thread of your own you may get a little more response. This thread is kind of a 'golden oldie' and people may skip over it as they look on the front page of the forum, not realising there's a concerned new member asking questions.

[MelSel3]

Hi, I am 43 and have very similar problems.  tingling and burning in arms legs, right side of face and my scalp.  Cannot distinguish the difference in hot and cold water.  But I also have joint pain in hips, wrists and elbows.  I have a burning tongue also.  I have seen two neuros, rheumatologist, switched gps.  I'm so tired of this.  I had a nerve conduction study and they said I have polyneurophathy and mri showed protusion of c5-c6, and c6-c7.  I have been told in the past I have fibro and I take Cymbalta and Lyrica but obviously that isn't helping because I have been on them for over 4 years.  I have had shingles and have b-12 deficiency but shots didn't help that either.  Could I have ms or lupus?  I do not have lesions on the brain.

[skinner916]

im 34 years old me and my wife have been batteling this for 2 years now i have gone threw all the test this makes my secound time i have to walk on crutches now im used to doing things my self now i have to ask for help drives me crazy but i have to do it now im use to it they said ill be in a chair in a year my family keeps me going ill prove them wrong .

[kwarendorf]

Hi YA-

Welcome to our little chat. CCSVI is indeed a much discussed topic in MS Land. More and more research is being done in this area. It does seem as those most of the findings can't establish a link between CCSVI and MS. Here is a summary of an article published earlier this month.

Kyle

Mult Scler. 2013 Jul 4. [Epub ahead of print]
Chronic cerebrospinal venous insufficiency: masked multimodal imaging assessment.
Brod SA, Kramer LA, Cohen AM, Barreto AD, Bui TT, Jemelka JR, Ton K, Lindsey JW, Nelson F, Narayana PA, Wolinsky JS.
Source
Department of Neurology, University of Texas Health Science Center at Houston, USA.

Abstract
BACKGROUND:
Chronic cerebrospinal venous insufficiency (CCSVI) was implicated in the pathophysiology of multiple sclerosis (MS).

OBJECTIVE:
We evaluated neurosonography (NS), magnetic resonance venography (MRV), and transluminal venography (TLV) in subsets of MS patients drawn from a single-center, prospective, case-control study of 206 MS and 70 non-MS volunteers.

METHODS:
As previously reported, findings on high-resolution B-mode NS imaging with color and spectral Doppler of the extracranial and intracranial venous drainage consistent with CCSVI were similar among MS and non-MS volunteers (3.88% vs 7.14%; p = 0.266). Ninety-nine MS participants consented to intravascular contrast-enhanced 3D MRV to assess their major systemic and intracranial venous circulation, and 40 advanced to TLV that included pressure measurements of the superior vena cava, internal jugular, brachiocephalic, and azygous veins.

RESULTS:
NS findings and MRV patterns were discrepant for 26/98 evaluable subjects, including four with abnormal findings on NS that had normal venous anatomy by MRV. In no instance were TLV pressure gradients indicative of clinically significant functional stenosis encountered. The three imaging approaches provided generally consistent data with discrepancies referable to inherent technique properties.

CONCLUSIONS:
Our findings lend no support for altered venous outflow dynamics as common among MS patients, nor do they likely contribute to the disease process.