Is It REALLY MS After All These Years And No Lesions?

[Patti66]

Diagnosed with MS since 1990 by a neuro who is an expert in the field.  Never have I shown any lesions on any MRI's in all these years.  I've been on interferon drugs for years and years and have had several exacerbations treated by steroids - some very bad, some minor - but always there are symptoms.  Am I crazy to question whether I really have MS after all?  I've had ANA tests for lupus and other things that can be ruled out by that test - negative too.  I've read that 5% of people with MS can go forever without a positive MRI, but how is that?  If it's there, shouldn't it show up?  I'm getting a little frustrated with the lack of "proof" of my MS.  I need some reassurance! LOL!

[supermum_ms]

Hi Kat,

I'm not sure if you've noticed that this topic is quite old, it dates back to 07 and unfortunately patti66 has not been active on medhelp since 08. After years of people being inactive, these posters will probably not see responses now, we can only keep our fingers crossed that our older poster have found their medical explanation and are getting the help they need.....

Cheers........JJ

[kat2wolf]

If you have any doubts...get a second opinion. I was misdiagnosed with Fibromylagia when I actually have MS. I went 20 years believing it was Fibro. My doctor at the time didn't do any tests to rule out anything else which is what they are supposed to do to diagnose Fibro.
I was also treated for heartburn for over a year when I actually needed my gall bladder removed. Besides living in unnecessary pain for all of that time...I was being put at risk by the possibility of my liver becoming infected. Unfortunately, in some cases, you have to fight and be demanding for answers.

[livinthedream]

Absolutely...lol..you have symptoms and I have evidence...lol  take really good care.

[Patti66]

Thanks for the comment.  Imagine if you and I could pair up our case histories?  We'd have one heck of a case of MS, now wouldn't we? LOL

[livinthedream]

Hi Patti...I have multiple lesions but really no symptoms and my neuro has not diagnosed MS after 3 years.  I have had LPs, evoked potentials, etc...but I do have the major evidence...lesions...so I get confused too.  I think it is good new that you don't have lesions...thank god...I think ms treatments are only really treating the symptoms and not really the disease itself.  But I am not an expert...Good luck and try to relax and be thankful that you don't have the lesions...that is great news to me!

[Patti66]

Well, I finally spoke with my neuro on the phone.  I have an appointment Monday.  He is starting to lean toward the fact that maybe, after all these years, it really isn't MS after all.  Or so it sounds.  He explained that 5% of people with MS can have "MRI Negative MS" - which is still possible for me.  BUT, as the technology improves (and he says I've had MRI's done on very advanced equipment recently), the chance of having MRI Negative MS decreases.  So all in all, it's quite disturbing that I've had serious MS like attacks over the years, continue to have MS symptoms, have been taking interferon drugs for over 12 years and I MIGHT NOT HAVE MS AT ALL?!  If it's not MS, what is it?  Has taking interferon for years without cause harmed my body in some way?  I'm really, really confused and upset.  He said we will discuss this further at my appointment - and he can be sure that YES, we most definitely will.  I am now back to thinking I must be crazy.  Just like in 1990.  But then I got the MS dx and was relieved.  Now I'm back to square one 17 years after the fact.  Insanity.

[needanswers54]

I understand just where you are coming from.  I have seen too many people with MS and certain other diseases labelled bipolar when they are just fed up from the pain, the invalidation, etc. etc.etc. Besides, I thought MS could make people more labile.   I asked for an MRI last December and the ER refused me due to time restraints.  I told them I thought I had lesions on other MRIs and possible autoimmune disease.  They did not listen.  Admitted me a couple of days.  NEVER DID GET AROUND TO THE MRI or EEG or anything!  Started me on depakote for my migraines and possible depression, yuckity, yuckity, yuck.  Well, the last two times I tried it I became worse and swelled-up so badly in the face with eyeballs that looked like partically boiled eggs, and suffered immense abdominal pain.  The first time people thought I had been in a car accident.  Also, a policeman stopped me and asked if I was okay as I was walking across a parking lot.  The second time there was a traffic stop to try and catch drunks.  I was driving home (without any alcohol in my system) from doing some work with a severe migraine.  The police swore I had been in a bar-room fight.  I told them to take me to the hospital to be tested and have my migraine and other symptoms treated.  I told them I did not feel like driving and that then they can admit me for a negative alcohol level and pay all the medical bills while I was there.  They let me go home.  Last December I started fainting from the medication and they would not contact my doctor.  I insisted upon leaving.  Each time I gained twenty pounds in 2-3 weeks.

In 2005 I was so sick and they threw the LP away without testing for infection, MS, or lupus, etc.  Two months later I had possible TM (new) lesions on  MRI (which they had also refused to run).

2006 they refused to do any MRI or such tests.  They admitted me and never did do the MS or any testing.  Christmas came.  I left.

Early 2007 an MRI at another hospital.  They would not do contrast.  Later decide I need the contrast.  Darn them!!!  Found lesions, also.  (Did MRI at different place as neurologist did not believe other MRIs at other hospital.)

For six months cannot get anyone to order an MRI with contrast.  Go to new neuro and act dumb.  Told him the other docs said everything normal but migraines.  He starts tests and treats me for severe migraines.  I get MRI results to office.  I go back and he diagnoses me with MS without needing anymore tests.  He runs new MRIs to check for new activity.  Refers me to MS center.

Now, the ER has all the MRI results and treats me with dignity and respect this visit.  Same doctor.  Quite the change.  He had started treating me well for my migraines after two years but would not run the other tests.  I was surprised he listened to me and actually checked my ankle and lungs and found that I really was injured and sick as well as plain migrainous.  And he advised more testing...hmmm...quite the change.

So many times in the past people had diseases and people just thought they were hypochondriacs or quackers.  I knew a lady in a wheelchair for six years after delivery of her baby.  I worked in the same lab system as her husband.  The doctors kept saying she was being lazy and not wanting to take care of her three kids.  Her husband stood by her and kept taking her to doctors.  His family wanted him to divorce her.  Thank God her stood by her.  Turns out she had a disease with a tumor.  After she had the tumor resected she was up and walking and it was like a complete miracle.  Finally, someone really looked for a reason for her symptoms.  That situation has really stuck with me.  I have just seen so many turnabouts in people's health with the proper diagnosis.

So, invalidation can really be the pits.  

I have heard of the Rubella Vaccine believed to being linked to auto-immune disorders.  I would put any vaccinations, changes in diet, living locations, illnesses, accidents, surgeries, job changes, pregnancies, etcetera in chronological order and see if anything matches up with the rest of your illness chronology.  

I hope that Duke gives you the dignity and help that you deserve.  Please, keep us all posted.

[pietiangel]

I have gathered up my information already to take, but my fear is that the doctor will do what others have done and go by what the other doctor said. I have had this happen and they just brush me off. I was looking at my labs I have done last night and noticed a few things I hadn't before. I noticed that my acetycholine binding lab results was high, which is seen in patients with Myesthenia Gravis. I also found another lab that said my C4 was low which is seen in patients with Lupus. I was kind of floored, that no one thought this might mean something with my history of symptoms. I forgot to mention that when I was in the hospital in Feb of 05 I had ptosis (droopy) in my left eye, slurred speech, High BP which was probably a result of not being able to talk, could not walk, could not hold anything, and I felt zoned out. They thought I had a stroke at first, but later confirmed that wasn't it. I was diagnosed with Atypical Migraines and Bi-polar disorder and sent home! I am not Bi-Polar! I felt so mad at that point and just wanted to go home and cry. I have never had anyone ever tell me that I was even remotely up and down and that I was making this up. They gave me Depakote and sent me on my way. I took the Depakote and decided to listen to them for a little while before realizing that I was worse on the medication....probably because I wasn't supposed to be on it! I also wondered if the Rubella Vaccine could trigger an auto-immune disorder? They made me take one at the hospital when I had my daughter. I was just curious if you knew.
I am having a bad day today physically. I am in a great mood, but my body hurts and feels run down. The tingling in my left foot is driving me crazy and so is the twitching in my left eye. I am so glad that you decided to write me back ess. I feel like you have done alot to try and help me out. I wish there was some advice that I could pass onto you, but unfortunately the doctor's around here don't seem to know much about anything either, that is why I am going to Duke in Feb. I hope you are doing well and I hope your day is wonderful! ;0)

pietiangel

[essdipity]

Hi again. Just one suggestion--Can you gather up ALL your medical records and reports, etc., to bring to your upcoming appointments? Do them chronologically. Don't include what the doc at your workplace says as this will be blown off (even though it's very significant in my opinion). Do a succinct timeline of your symptoms, also including when you were camping, pregnancies and so on.

The idea is to make the very most out of your time with the new neuros. You want to be prepared with documentation since this will be regarded, however unfairly, much more highly that just what you say. And as you talk, be as concise as you can while including everything that from what you know might be relevant. It's too bad we have to do it all this way, but most of us here have severe "neuro-burnout syndrome'  8-)  and have learned to tread carefully.

ess

[pietiangel]

I looked at my ANA and it said positive but negative titer, so this is probably a false positive you think? I had an MRI done recently on a machine that I think was a Tesla, but the pcp that ordered it until I can see my new neuro in Feb, ordered it w/o contrast and did not tell them what he was looking for. Also, some of the pictures of my films are blurry and I was a little upset, because I asked them if they were ok and they said yes. I disagree! I do know that I had a serum blood test done to check for anti-myelin antibodies and 3 of my titers were positive and slightly elevated. I spoke with one of our doctors here at my work and she explained the test to me and told me not to let anyone tell me there was nothing going on and that they could call her anytime to discuss this. I just work in a lab or I would see her all the time. The titers that are positive are suggestive of MS, SLE, or Gullian Barre syndrome. I am going to see another Neuro at Duke University in Feb too. I have 2 neuro appt's set up during the same month, I know that sounds crazy but I am fed up! Thanks for clearing up the 5 % thing, I misread the article I got that from. Do not worry about writing the long post's, I do not mind. I do that too. I feel like I get more help on here than I do from the doctors. I do remember that I had a slightly positive RA factor, but the doctor said it did not mean anything. I had a normal Sed-rate and I had normal B-12 levels. I had an abnormal EVP too and the notes on the results suggested clinical significance and further testing was needed, but none ever really was. I have had 2 doc's say they wanted a Lumbar and decided to hold off since MRI was clear. It took my grandmother almost 10 years to be diagnosed with MS and it took my aunt a few mnths (she was one of the lucky one's to have it show right away and not have to go years)I have never been checked for Lyme since the doctors have said "no rash no Lyme". I know this is not true! Anyways, I thank you so much for all your time! Write me anytime you want.

Thanks,
pietiangel

[needanswers54]

Hi, again.  Well, obviously my ability to keep my continue train of thought and focus is somewhat lacking right now.  Anyway, I had ANOTHER thought.

Recent research has shown that MS patients who take MS stabilizing drugs for at least two years generally only show disease progression over an eight year period what another similar patient has been shown to progress in two years when not on the drug therapy.  At least you know that you have tried to do the best for yourself healthwise.

Also, you can have an elevated ANA in MS, also.  But, it generally does not go above 1:320.  Did you have an elevated ANA that then tested negative for the other auto-immune disorders?  If you did, I am curious as to your ANA titer and pattern.

I can understand your concern over your diagnoses and lack of additional positive test results.  Did you ever have your MRIs done on a higher powered (higher Tesla machine)?

Keep us posted, okay?  Have a HAPPY HOLIDAY SEASON!!!

[needanswers54]

Hi!  Just one last comment.  With regards to the 5%.  I am thinking that the 5% means that 5% "of the people diagnosed with MS" may never have lesions.  However,  as technology advances, I think that more and more people will be diagnosed.  So, the percentage of people with MS and similar diseases may increase until/unless a cure or preventative is found.  Likewise, the 5% number may also change.

Hang in there!  I hope you can get some more testing and get some answers soon!  Good luck!!!

[needanswers54]

Hi!  A neurorad is short for neuroradiologists.  They are radiologists with special training in reading radiology films with more of a neurological insight.  It is somewhat analogous to the difference between a surgeon and a neurosurgeon.  A surgeon trains to do many types of general surgery, whereas a neurosurgeon has special training in performing surgery of our nervous system such as the brain or spinal cord.  

Usually, if an MRI is performed it is generally for an overview of the soft tissue of the area for abnormal structures, tumors, arthritis, etc.  Much of the time spinal MRIs are done for back problems such as arthritis or herniated disk or collapsed/diseased vertebrae or spinal stenosis as these are the more common problems that people have.  Thus, the radiologist will look for obvious things such as tumors or malformations as well as diseased bone and narrowed spinal column, etc.  However, MS lesions are sometimes very small, like 3 mm or less.  Often they can go unnoticed if there is just one.  If there is any movement during the exam various areas such as the spinal cord can be blurry so the lesion is not readily visible.  Sometimes positioning or poor film quality such as graininess (lower pixel quality) can make lesions difficult to ascertain.  So, sometimes the radiologist might also consider the spot an artifact.  In view of all the above and because the radiologist is often not as well trained as a neuroradiologist to look for neurological signs on the MRI a small defect can go unnoticed, particularly if the radiologist is not tuned in to look for it by the diagnosis or stated reason for the exam.  A neuroradiologist will often be more likely to notice other more rare things like a syrinx or certain abnormalities that not all physicians/radiologists are trained to see.

Also, when a physician expects MS he/she will often request it be run with and without contrast and perhaps by an MS protocol.  Then, there are often smaller sections/more slices done with increased quality and with other MRI techniques such as flair, etc.

All in all most radiologists do a good job when reading films.  But, there is a lot to look at and a small lesion could easily be missed.  And then, again, some lesions such as a perivascular lesions in the brain may or may not be noticed or may be considered normal depending upon the patient's age and medical problem noted on the test request.  So, when in doubt, I suggest asking for a neuroradiologist.

I could not get into a neurologist to get an MRI when I felt I needed one last year.  So, I had my rheumatologist order one.  He did not order contrast however, because that is generally not needed for arthritis of the back.  I checked prior to see if contrast could and would be done.  I was told it would be.  Then, after running the MRI without contrast they would not do the contrast.  I asked the tech to ask the doctor for contrast.  The tech said the radiologist said the films were okay.  I told him I knew differently and pointed out problems and asked him to check with the radiologist, again.  Again, I was refused.  I asked that the films be shown to a neuroradiologist as I told them I really thought that there was a neurological problem.  The films were later reviewed by the neuroradiologist (neurorad) who then stated that the films were indeed abnormal as I had initially pointed out and contacted my rheumatologist that a repeat MRI with and without contrast (and costing several thousands of dollars) was now needed.  My rheumatologist sent me to another neuro who did nothing and said that whatever was wrong that I was doing pretty good that day and sent me home.  So, I went to the next neuro and told him that the other doctor said that everything was normal.  When he could not explain my symptoms, I offered to give him my MRI reports.  I did that visit from a dumb lay-person point-of-view.  He said the results were not normal.  Then, he ordered more MRIs done on a machine where they were done before.  The head-radiologist and neuro-rad there read the multiple lesions on my spine.  The neuro-rad told me that the radiologist read my brain as normal probably due to my age, but that I really had lesions there, too, which were unstated due to the above.  Sometimes a radiologist may call a lesion normal because it is not that unusual for our age.  However, that does not mean that it cannot be caused by something else as well which may be related to our problems.  

We can have more than one problem going on.  That is another problem with MS and other chronic health problems.  We need the diagnosis to get the meds we need.  But, then doctors are sometimes quick to blame other health problems on the MS which could actually be caused by something else and be more efficiently treated if proper causation is determined.

So, if in doubt, I would request a neuroradiologist review the films.  Also, I would ask the person requesting your test to be sure and be specify that you MRI needs to be done by a protocol consistent with your problems and possible diagnosis.  Also, neuros may prefer a repeat MRI (if a problem is discovered) be done on the same machine as before so that a comparison may be made to see if a lesion is getting smaller or larger.

My first lesion was not even noted on the MRI.  The next MRI it was noted as an artifact.  The next MRI it was noted as changed (but felt to be insignificant spinal cord damage).  The next MRI at a different hospital another abnormality was noted with various different diagnoses given as possible explanation.  A repeat at the former hospital then showed the other noted changes this year.  And finally, I have been taken seriously.

I am not a doctor and I know that this is probably more then you were asking for.  But, just thought I would give you some insight as I have gleaned it from medical experience.  Sometimes it is good to have the other ideas to consider.  Hope this helps!  Good luck!

[pietiangel]

I was just wondering what a neuro-rad was and why are more neurologists not open to understanding that 5% is not that small of a percentage if you take 5% of the whole world. I think that is 1 out of 20 people, that's crazy! I myself have been waiting for a dx, ms or not, and have struggled to get anyone to take me seriously because of lack of lesions. I wish I could just get one doctor to look at my history of symptoms, some of my test's, and my family history of MS. I have ranted about this in another part of the forum and feel like I keep repeating myself, but I feel like that is all I ever do anymore is repeat myself ;0) Hang in there and take care! God Bless!
Pietiangel

[needanswers54]

Just a bit a info that I had read recently.  Darn, I wish I could recall where I found the article..I think it was on the internet.  Anyway, as far as the 5% of MS patients without lesions:  During autopsy lesions or destruction has sometimes been seen that was not obvious by the 1.5 MRIs.  Also, even if no lesion if obviously visible, more intense examination has shown that there is ongoing axonal deterioration or other nervous system inflammation or damage as is associated with MS.  Sometimes the changes are only seen microscopically.

I agree with T-Lynn.  Other opinion(s) might be helpful.  I would definitely have my films read by a neurorad if you are unsure.  I insisted on it at two different facilities.  Lesions that were being dismissed by other radiologists, neuros and neurosurgeons [for years] were read as demyelination by the neuro-rads.  

[T-lynn]

I was Dx'd on negative MRI's until recently and they were read by a neuro radiologist.

My original DX was in 1998 with transverse myelitis and ON.

I refused meds and no symptoms until 2004,was rediagnosed in Dec.2006 with MRI's being normal except for brain atrophy and black holes.My visual evoked potential was abnormal and a VNG done by a neuroOtologist detected lesions near the brain stem and the left side of my brain which explained the right sided symptoms and my LP came back with border line iGg synthesis and the myelin basic protein was off the charts.

I had MRI's done 2 weeks ago local radiologist stated they were normal and had a DR friend who took them to a neuro radiologist to reveiw and they are positive for c-spine lesions and lower thoracic lesions.

With this disease anything is possible and you may fall in that 5% that show no lesions , a second opinion may be a good idea.

T

[6-paq]

Good question.  I would think that after all of these years something would have shown on an MRI.

But, it's also been 17 YEARS since you've had an LP or evoked potentials.

I wonder if a repeat LP and a full set of evoked potentials (VEP, BSEP, SSEP) would now show some evidence?

If your have some question as to your diagnosis, would your neuro repeat those tests?  Is it possible to go to another neuro for a second opinion?

Take care and welcome to the board!!  Pat :)

[Patti66]

Thanks so much for your replies everyone!  I'm new to this board, so it's cool to have people respond right away. :)  Yes, I had an LP in '90 - negative.  Maybe I need a to have another one (yuck).  I had MRI's of my brain, cervical and thoracic in October of this year - nothing showed up again.  The ONLY thing that ever indicated MS was a visual evoked response in '90 of my right eye, which I question because I have kerataconus in my eyes (another lovely rare eye disease) and I always figured it was actually that which caused the problem on the ER test.  But who knows?  Maybe it really was the MS.  In any case, I'm in the same boat as all of you and isn't it just such fun?  LOL

[Heather3418]

As I understand it, medical examiners have said that at autopsy, that they have seen people whose brains are full of obvious MS lesions, but yet, have never suffered from one symptom all of their lives.

Some people with MS have no lesions or only one lesion.  Some people with MS has dozens of lesions.  As in real estate, it's location, location, location.  One lesion can cause more trouble in a person's life, than a person who has dozens of lesions.  As is seen during autopsy's....a person can even have many lesions but never have had any symptoms.

We obviously still have so much to learn about the central nervous system and how it works..don't we?

Heather

[BondyinOz]

Have you had an LP? Do you get MS symptoms? As far as I understand, you can definitely have MS without lesions, but I don't know a whole lot about it. Did you have an MRI of your brain and spine, with and without contrast? Have you had one lately?

Mel :-)

[Super_sally888]

Hi Patti.  

I can feel your frustration.

MS is to a large extent a diagnosis of exclusion.  Ie. if the symptoms make sense and there is no other identifiable cause then they will diagnose MS.  Particularly indicative is a pattern of remissions and relapses.

MRI are not the be all and end all.  Lesions may not present in a way that can be seen by MRI.  That doesn't mean there are no lesions or problems.

Not really an answer.  But it is possible to have MS and not have things show up on MRI.

Sally