Mri questions; help please

Hi,  I am new here.  I have fibromyalgia (for 2 1/2years) but have been experiencing some ms type symptoms for about a year now.  (Blurred and numb left eye, legs seizing up on me, tingling and numbness in hands, feet, legs and now face, extreme fatigue, balance issues, and so on.)  I had an MRI last November, here is what it said "Impresion:  scattered foci of altered signal intensity within the right frontal white matter and left frontal and parietal white matter.  These are consistent with small foci of gliosis and/or demyelination without evidence of enhancement.  Differential diagnosis includes microangiopathic disease as well as demyelination process".  Ok, fine.  The neuro blew it off saying "thats from your migraines."  I don't have migraines.  Oh, I am 44.  Fast forward to last month.  

Have a second MRI, different neuro, this time with contrast.  Here's the impression:  "Probable increasing number and size of periventricular white matter lesions since the prior examination; this is consistent with ms in the appropriate clinical setting but sequelae of chronic microvascular ischemic changes is also a possibility."  The second neuro stated:  "I don't agree with his findings."  ??????
So he sent me off with a rx for another pain med and said it's all from my fibro.  Whatever.  Any thoughts on my mri's would really be appreciated; obviously I am not taking this guy seriously.  Along with any opinions I would also love to know if growing "more and bigger lesions" in ten months can ever be "no big deal" like this doctor seemed to feel.  Thank you, Amy

[Amyloo]

[Amyloo]

Wow, this is a fast moving forum.  I hate to be a pest; but any info or input would be appreciated.  I promise not to bump this up again, but you people seem to really know what you are talking about so I guess I'll be "pushy" just this once.  Please forgive!  Amy

[Quixotic1]

I put you on my list for a response, but there are a couple ahead.  It's okay to be a little pushy.  We actually advocate that in getting your won answers - out of a doctor or from anywhere.  The forun is grwoing very fast now, and we have to be vigilant not to let people get shoved off the page.

Quix, MD

[Amyloo]

Thank you, I will wait patiently!  Amy

[Heather3418]

I promise to post a response as soon as Quix gives her opinions.  I am anxious to see what she says.  You are most gracious to wait patiently for her response.  You will be glad you waited.  Her advice is right on...

I'll post again soon.  And welcome Amy.  You've come to a great place.  I have been diagnosed with MS for over a decade, so I do have some thoughts about what your MRI's showed.

Heather

[Amyloo]

Thank you Heather.  I'm interested in what you have to say.

[Quixotic1]

Oh, my.  this really is my "hot button."  Your first MRI was done because (I presume) you complained of several neurologic sounding symptoms - the numbness, problems with your legs, the fatigue, right?  So some neuro orders an MRI to see if there are any lesions.  Surprise, the MRI shows lots of lesions, mostly suggestive of a demylentinating disorder, but could also be tiny vessel disease ( the most common are the very tiny lesions of migraines or of high blood pressure.)  So this doctor, instead of noting that he found exactly what he was checking on,  dimisses them with an off-the-cuff explanation that doesn't even match your medical history.  Had he even asked you about migraines??

I have said at least a hundred times:  When you go looking for lesions because a patient has neurologic symptoms, you cannot dismiss the ones you find as "normal for whatever!!!!"  The reality is that by 44 you might have some small lesions from who knows what.  They begin showing up around the forties.  That means that anyone of your age and up can/might have some lesions.  However, they are also what the neuro was looking for.  Now this neuro was a total dimwit and maybe because the lesions weren't in the perfect place like the "periventricular" or the "subcortical", he dismissed them outright and did you a huge disservice.  Statistically the lesions will appear in the most common spots, but they can occur anywhere.

Fasting forward (??)  2nd MRI show lesions increasing in number and SIZE.  This is a major red flag to look further.  Unless you have severely uncontrolled and very high blood pressure or have been having fairly regular strokes, this MRI screams "Work ME UP!!"  Not only that, but this MRI has the lesions in the classic "periventricular" white matter.  I agree with you.  What didn't he agree on?  That the lesions were increasing?  Seriously, that is a strange and lazy interpretation.  The neuro is there to ensure that nothing serious is missed!  Okay, chuck neuro #2 into the wienie roast.  the bonfire is going to glow brightly this week!

Now, what is the diagnosis?  Nobody can diagnose much of anything online.  But, you found your way onto an MS Forum and I'll say a few things within the context of MS.  At this point I would like you to post and tell us a little more about the problems, the paresthesias, the leg things and the fatigue.  When did everything start?  What symptoms came when and how long did they last?  Have there been times you were okay?  Give us a timeline about the symptoms that prompted two MRI's and brought you here.

At this point, with the symptoms all lumped together and those two MRI reports, you deserve a workup for MS, which BTW is also a work up for all the things that cause white matter disease.  First you need a good, smart neurologist who won't "write you offf" because of a prior diagnosis of Fibro (which is not associated with white matter lesions!!).  I would recommend seeing an MS specialist who is will to work someone up who doesn't yet have a diagnosis.  We can give you some tips about finding one.  You definitely need an MRI of your cervical and thoracic spine with and without contrast.  You deserve a thorough and competent neurologic exam to see if there are any signs on your exam of white matter disease.  You also whould be worked up for the other things which can mimic MS, such as things that cause multiple small stokes, vasculitis of autoimmune diseases, B12 deficiency, Lyme disease and other infections.  A good neurologist would have known last November to do the basic workup.  Living without a diagnosis, but knowing something is wrong is far worse than dealing with a definite diagnosis, whatever it is.

I recommend an MS Specialist because they have to be as good at ruling out MS as they are at diagnosing it.  If you have spent any time on the forum, you have seen that the world seems to be absolutely littered with dismissive, dumb, dense, disdainful, neurologists.  I'm sorry you have encountered two already.  

Stay with us and we can help you navigate the process to come to some understanding about what is happening to you.  I hope to see your timeline and it will give us a better idea.  But, you need a doc who will listen TO you and look at the MRI as they might pertain to your symptoms.

Finally, you may have heard, (or will hear) that you are too old for MS.  Horsefeathers!!  I was told that at 52, thus delaying my diagnosis until I was 55 this past spring.

There is a thread which I will bump up called "MRIs, Lesions, and Symptoms"  It says most of what needs to be said initially about the topic.  Look through all the posts because there are essays farther down, too.

Heather, You're on!

Quix, MD

[Heather3418]

Amy, I am in a total agreement.  Your second MRI DOES scream for immediate attention by someone that will listen.  The second MRI and all of it's changes should have scared the h e l l out of him.  He should have ordered more testing right then and there.

"Too old for MS?"  Hah!  Welcome to the, "I showed lesions in my 40's club."  Am I saying it's MS, I can't say.  Is it suspicious?  Yes!  But what I am saying is, that you are NOT too old for MS.  This is the age that MS will present itself.  So your doctor is way off base.  And you can tell him that I said that.  I was 42 almost 43 when I was diagnosed.

Like Quix, I am anxious to hear about what symptoms you have been experiencing.  Do they last longer than 24 hours?  Do they lasts for days or weeks?  Do they then disappear totally or are they constant?

Please give us a list of your symptoms.  Also write everything down...this will be important if you can get an appointment for a second opinion.  Put your symptoms in a "time-line," and keep the time-line concise.  It's easy to list a symptom, then write a paragraph about that symptom.  The doctor wants to get down to the bare-facts quickly.  There will be time later, to go into more depth with the "new" doctor.

Please take Quix's advice.  I hope that you will find some pertinent information in the post, "MRI, Lesions and Symptoms."  There is a wealth of information in that thread.  Please keep us posted.

Heather

[Amyloo]

Ok, first, you ladies are hilarious.  And smart too.  Always a good combo.  Thank you for your interest, here's my story (with paragraph breaks!)

Ten years ago, driving, horrid brain zap/vibrating thing in head, lost vision in left eye for a few seconds and then (charming) lost control of my bowels.  Yep, in the car.  I did pull over.  Told my gp; he wasn't too concerned but did put it in notes.  (At this time I had been seeing him on and off for neck probs; later to be diagnosed as cervical facet syndrome and myofacial pain syndrome.) I have been living with chronic neck issues since then.  Also, numbing and tingling in feet, hands, and left leg; all chalked up to my neck issues.

July 05:  Lots of pain, felt like deep bone aching.  Went for bone scan.  Nothing but arthritis in wrists. Debilitating fatigue. Went to rheumy in Nov. 05, diagnosed fibromyalgia.

Nov. 06:  Started having CNS issues:  blurry and numb feeling left eye (on and off) balance issues, trouble walking (legs seize up and feel uncooperative) facial tingling, lips tingling, swallow reflex "froze" up on me, spastic urethra, incomplete bladder emptying, trouble starting, dribbling etc., muscle jerks-head jerks back, a finger will fly up on it's own, mouth will fly open and then shut really fast-kinda freaky, and an big increas in pain and fatigue.)  Went to first neuro.

Nov 06, first neuro:  he did the standard stuff,  (touch testing, heal to toe walking, etc.) ordered mri (no contrast) and wrote in his impression:  "would doubt demylination process".  So the mri comes back and he says "it's normal, you do have some lesions but those are from your migraines."  I said:  "I don't have migraines."  So he says "Well, they are over 18 months old so they could be from anything, like a viral infection, etc."  He also did a nerve conduction study which shows an issue in the upper extemities as follows:  "Muscles at rest reveal evidence of increased insertional activity, which is recorded in the right biceps and triceps regions where there is evidence of superimposed, low voltage fibrillatory activity recorded in 10-15% of sites on the right and also in the left biceps area."  His impression states "partial denervation in c-5 to c-6.....consistent with root compression of undetermined age".  I chalked this up to my neck issues.  He sent me off, calling it fibro stuff.

Oct 07: Symtoms (symptoms) are worsening, and I am scaring my family.  Now when I get out of the shower my face goes numb and body goes into rag doll mode.  Words don't always form properly, and my legs are now shaking sometimes when I walk. Left eye really bugging me, now I am seeing spots and "dark flashes" out of the side of my eye.  Enter neuro #2.  He is a "neuropsychologist" that is paid by pharmasuitical companies to do new drug testing.  I found him because he was doing a fibro study and I called to see if he could help me with what was going on.  He seems nice enough, does the same neuro testing for ms.  Orders mri of head and neck with and w/o contrast.  (Neck is clear of leisions by the way.)  

Oct 07:  Go for my 2nd mri results and he says "normal".  (I posted above about his feelings on "bigger and more lesions"  Its Magic!!!!!)  So he sends me off with a rx for lyrica (90 tabs for a month with 5 refills on a controled substance-this guy has seen me twice!)  I do not intend to fill it let alone take it.  He said it is all fibro related.

So there I am.  I have an appt. with an MS specialist (referred by the MS society) but not till January.  I'm ok with that.  It is what it is.  Hope this hasn't been to long. (I know, everyone says that!)  

P.S.  Does anyone know if "bigger and more lesions" in a ten month period can be explained by anything other than a serious issue?  I do not have high blood pressure, nor diabetes etc.)  

God bless you all; keep up the good work.  We need you.  Amy
  

[Quixotic1]

I will answer this.  This forum is getting hard for me to keep up with, and I have very little else to do.  I'm committed (or am being committed....it's not clear) for the next several hours, but I will comment on your answers.  I can't believe I missed them.  Sorry.  Quix

[Amyloo]

Thank you!  You are a doll, as many have already said.  I appreciate it.  Amy  P.S.  Please don't be sorry; you are helping lots of people whilest dealing with ms.  That's huge.

[Amyloo]

I posted my "story" a few days ago on this "mri post".  If anyone doesn't have anything else to do (ha) please scroll down a bit to read; any input would be appreciated.  Thanks!  Amy

[Heather3418]

Your question about the "bigger and more lesions," really needs to be answered by Quix or your Neuro.  I just don't know enough about it to be able to give you valid information.  I certainly am not trying to dodge you.  I just don't know.

Quix posted yesterday and said she was having trouble with her eyesight again.  Trust me, when she is feeling better she WILL come back on and answer your question if she knows.  She is really good about that.  Quix has really been through the wringer lately, so please try to be patient.  She has a hard fight on her hands with her health and recent family events.

Hang in there dear...I hope that she has the answers you seek.  I did some research on the internet about the large lesions and cannot find anything of value to pass along.  I am so sorry.

Heather

[Amyloo]

Thank you Heather.  I do know of Quix's issues right now; I guess I got a little "into myself".  Bless you, Amy

[T-lynn]

You definately need a MS specialist as these past 2 are definately defective.

When lesions become larger and multiply this raises a RED FLAG!!!!  The Radiologist also needs thrown in the weenie pile.

I was DX'd at 40,Rebif was my 41st birthday gift,

January will be here soon.I'd write more but my visioon has been very poor lately.

Keep up a strong fight and advocate for yourself.

T

[Quixotic1]

Hi, I can't think of anything except repeated small strokes that would cause increasing lesions like this, or possibly one of the rare infection mimics that should have been tested for long before this.  The first, secondm, and third most likely diagnoses here (BUT NOT the only possiblilities!) would be MS.  

The first neurologist was making stuff up about the lesions being over 18 months old.  With MS, at least, a lesion will show as "old" and nonenhancing after about 6m to 8 weeks.  The second neuro didn't want to do anything but treat Fibro.

The two MRI's show a characteristic change seen in MS, so your visit with a specialist is the best thing you could have arranged.  You have had some significant visual symptoms.  One of the tests that I think you should have in the interim, while you wait for January, is a Visual Evoked Potential - VEP - to see if any of those visual disturbances represented Optic Neuritis.  A + VEP would be a very strong indicator of MS, in the face of classic physical symptoms, increasing lesions on MRI.  Just a thought.  

It's not uncommon for people with MS to have other things also, especially things that are common like Cervical Disc Disease.  Having both does muddy things a bit, but should not stand in the way of getting an accurate diagnosis of what ever it is.  

The other thing you might be able to do in the meantime is see a urologist or a gyne-urologist to evaluate what the specific problem in the bladder is.

Sorry you had to wait, but I'm glad you've joined the forum.

Quix

[Amyloo]

Thank you Quix.  Your input is important to me.  I saw a urologist; will make a separate post.  Bless you,  Amy