risnerrose

[risnerrose]

After coming full circle, I'm once again facing a possible MS diagnosis.  My symptoms began two years ago with symetrical joint pain and numb toes.  A visit to a rheumatologist provided negative test results for RA, Lupus, Lyme disease, and many others.  Joint pain subsided after a month, but was quickly followed by facial tingling and odd sensations (like cold water being poured over my head).  I also had an episode of sudden weakness in my right leg and arm.  My GP suspected MS, but also was concerned about a stroke.  She went ahead and sent me for an MRI, because I had to wait two months for an appointment with the neurologist.  The MRI was reported to be "clear".  My neurology appointment provided a diagnosis of idiopathic peripheral neuropathy.  I was told that I was too old for MS (41 years old).  I've spent a year dealing with waves of symptoms.  Some were very peculiar, such as . . . for two weeks if I touched my right calf muscle I felt it near my ankle.  While at church camp with 20 children this June (lots of heat and stress),  I had a resurgence of very scary symptoms.  I had multiple episodes where I was unable to move the right side of my body.  I was sent back to the neurologist, with new MRI results "indicative of several small strokes".  The neurologist decided to compare the new MRI (without contrast) with the one done over a year ago, only to tell me that the "lesions" were present then also (I was very frustrated that they had been overlooked a year ago.)  It seems I have several small lesions.  He very casually mentioned MS, but made a statement that he probably wouldn't bother with the LP if I had not been exhibiting the symptoms.  I was totally caught off-guard (I went to the appointment thinking "stroke" and was once again hearing of the possibility of MS).  I was speechless and only thought of questions after I had left . . . that's why I'm posting here.  (I go for a LP in two weeks.)  

My questions are . . .

How can lesions be confused with "areas indicative of several small strokes"?

Was I being told that I do probably have MS or that I do not have MS?? (I'm so confused.)  

What specific questions should I be armed with when I go back

Thank you in advance for any insight.

[JonM]

From my own experience I have learned that reading an MRI is not a clear, consistent, practice.  Different MDs can review the same MRI and not see the same things.  The best readings are made by Neuro Surgeons.  Most Neurologists and cetainly your GP will rely on the radiologist reading.  If the confusion persists ask the have your MRIs read by a Nuero Surgeon.  

The LP will help diagnose and try to get an EVP and ESP test too, as these are useful.

Best of luck

JonM

[T.O.fire]

Please excuse me but what is LP, EVP.ESP thanks

T.O.fire

[Super_sally888]

Hi,

Sorry you are back here again. :)  But you are in the right place.

Yes, MRI can be read different ways by different people. Some people have very clear pattern on MRI and others are not so clear though there is obviously 'something' happening.

My MRI has small white spots (I researched and this can be unknown and of no concern (though it should be of concern if there are symptoms), from migraine headaches, associated with B12 deficiency, assoicated with stroke.

In my case ..... some of my drs are thinking MS, and others are saying 'it's nothing to worry about'... but likely it is something to worry about when you consider the symptoms.....  

As JonM says would be important to get some more tests to confirm.  I guess it comes down to symptoms and how to explain them.  Quix has a great post about history of MS and it's diagnosis.  Very helpful to read.

I think it is most important to decide if you have or probably have because there are disease modifying treatments...... and remember if it is MS then you are going to be a lot more sure about what you're dealing with.

Best wishes

Sally

[risnerrose]

I don't know what EVP and ESP stand for?

[JonM]

Sorry guys, got my initializations screwed up

EVP = VEP or Visual Evoked Potential (test for visual processing) about 85% of MS sufferers will test positive on this test
ESP = SSEP Somatosensory evoked potential (test for sensory processing)
also one for Auditory processing called ABEP (Auditory Brain Stem Potential)

LP is for Lumbar Puncture, also known as a spinal tap.  Removes clear spinal fluid from lowest point on spinal cord for  analysis.

JonM

[risnerrose]

I would love to hear your thoughts and recommendations for what I need to ask and/or pursue.

[Quixotic1]

[Quixotic1]

I will be glad to offer my thoughts.  I'll be back later tonight.  Quix

[risnerrose]

Thank you so much.  I have also been getting more headaches lately, with very specific areas of pain.  The idea of a stroke is still in the back of my mind (pardon the pun).  Even with the discomfort, my most troublesome symtoms now seem to be cognitive.  I am a teacher and am having great difficulty planning out my lessons.  We are three weeks into the school year, and some days I feel totally inept.  My ability to monitor and adjust seems to have disappeared.  I could go on and on, but I think I'll stop.  Thank you again.

[Quixotic1]

Whew!, I finally feel up to a longer, thoughtful discussion.  My chronic vertigo (and difficulty tracking with my eyes) limits how long I can spend reading and writing (.........and.........uh..........thinking)  Sometimes I promise action on something, and just don't have what it takes to come through, so I am notoriously unreliable.  Often you'll see me "playing" on the forum or answering quick questions that I already know the answer to.  Those are times when I can't put new info together very well and, if I try, it gets all garbled.

I always start out by saying that, although I am a physician, I am 6 years out of practice and my field was pediatrics.  I cannot diagnose MS or really anything on line, but I try to put things into an intelligible perspective and often talk about things "in the context of MS."  Afterall, you found your way and landed on an MS site!

Your first episode 2 years ago sounds very much like a viral insult and the work up for an autoimmune (specifically arthritic) disorder was not at all out of line.  Several viruses have been suspect in triggering the immune "out-of-whackedness" (official medical term) that results in specific disorders such as MS, Type I diabetes, thyroiditis, Guillain-Barre Syndrome and CIDP.  Symmetrical joint pain itself would be a very unusual presentation of MS.

Okay, that first neuro was a dufus and you are now eligible to pledge for Hypo Gamma Chondria - more on membership details later.  The MRI was reported as "normal", but did this guy look at it himself?  If not, he doesn't deserve his certification.  So he told you that you were too old at 41??  (You're but a child!  I was told I was too old at 52, thus delaying my diagnosis until I was 55) Interesting.  The OLD criteria from 1965 for diagnosing MS gave an age range of from 10-50.  That was dropped by 1983.  Hmmm........so he wasn't even correct about the old outdated info!!!!!!!!!  He diagnosed Idiopathic (means the "idiot" didn't know the pathology) Peripheral Neuropathy.  Please tell me he at least documented that the problem was peripheral with Nerve Conduction Studies!

Check out the thread on this page called "History of the Diagnosis of MS"

When you talk of waves of symptoms, what occurred where and for how long.  Did things come and go?  How long did a particular symptom last?  The symptoms you describe are classic for MS and much, much less for peripheral neuropathy, and less, tho not impossible for repeated strokes.  It sounds like this time the neuro at least glanced at the films.  Vascular lesions (like from multiple small strokes) if they are small, can look look like small, indistinct MS lesions and vice versa.

His dismissal of MS because you hadn't had the symptoms sounds like he didn't take a careful history.  The diagnosis of MS - and many other neuro diseases - depends on a thorough (read that (THOROUGH) history and neuro exam.  You really need to dump this guy, seriously.

The next testing you need is MRI's of the cervical spine and the thoracic spine done with and without contrast.  You should also have a Visual Evoked Potential test for signs of past Optic Neuritis (very common in MS and often without symptoms).  The other evoked potential that yields the most info is a SomatoSensory Evoked Potential (SSEP) especially on the limbs where you have most of your symptoms.  The LP is fine, but the less invasive testing is usually done first, because if you can establish the diagnosis with doing the LP, you should.  My worry is this neurologist is so backward (defective, dense, dismal, dim-witted) that he won't know to send the proper tests on the spinal fluid!

From what you've told us this neurologist couldn't diagnose MS at an MS Chapter meeting.  I would highly recommend that you make an appointment with a large local MS Clinic, take the two MRI's with you to be read by doc's who know what they are looking for.  If it is MS, you need to be under the care of someone who is up-to-date on MS treatment and can do the proper testing in the proper order to establish or RULE OUT the diagnosis.  The MS Specialists have to be able to do both.

The diagnosis of MS is put together looking at the history and physical, and the substantiating diagnostic/test results.  One of the requirements is that "all better explanations have been ruled out!"  If anyone is saying or thinking multiple small strokes then you should LONG have had the work up for those conditions that cause this!!!!!!!!!!   and more!!!!!!!!!!.  You should have blood testing for all of the mimics of MS.  The common ones that cause ministrokes are typically the ones that cause abnormal clotting or vasculitis, like

Anti-phospholipid Antibodies
Anticardiolipin Antibodies
Angiotension Converting Enzyme
ANA
Factor V Leiden

plus the usual mimics

B12
copper ceruloplasm
RPR
Lyme Disease by Western Blot (sent to a lab specializing in testing for tick-borne disease)
HIV
HTLV I & II

You have three of the common "systemic" problems seen in MS.  They are not specific to MS, but put together, they should make anyone consider it as a diagnosis.  90% of MSers complain of a crushing, almost insurmountable at times, fatigue.  This fatigue is poorly improved by rest.  Heat intolerance is especially common in all the diseases that cause the nerves to have the meylin sheath damaged.  I have found that temps that I used to be comfortable in, 75 to 85 degrees, now cause weakness, tingling, and irritability.  The third is the cognitive stuff.  It really sucks to watch yourself get stupid and incompetent, doesn't it?  The most common complaints are problems with short term memory, word recall, multitasking, and abstract analysis.  We all start feeling like airheads.

Unless I made assumptions that aren't true about this neurologist, I don't think you are in good hands going back to him.  If I overstated his errors then you should ask about:

MRI's of the spine:  It would be very unusual to see ministroke lesions in the spine.  Lesions there would be highly indicative of MS

Evoked potential testing, especially Visual

Blood work to rule out things that cause neuropathy and lesion in the brain, especially the things that can cause ministrokes (clotting disorders and vasculitis)

Ask specifically what abnormalities you have on neuro exam.

You need copies of the MRI's and of the reports.

If you decide to have the spinal tap done by his order, what tests is he going to request on the fluid?  AT a minimum it should be, total protein, glucose, cell count and differential, all the usual cultures, IgG sysnthesis rate (need to have a blood draw at the same time), IgG Index, and oligoclonal banding.  If he can't name all these, run for the hills!

Well, I'm pooped!  Any questions? quix

[risnerrose]

Thank you so much.  For the first time in two years I feel like I have information to work with.  This forum has been a God-send . . . as have you!

[risnerrose]

bumping up for jazzy

[Jazzyfizzle]

Thank you for bumping! I am going to read it over a coupe times so I can try to absorb what I am reading. (you know the brain)

Hugs!!!

Jazzy

[Jazzyfizzle]

Ahh very, very interesting reading gal! Can you tell me again, I'm sorry, this brain & body is on low level function mode today :( ,  can you tell me again how they decided that it is not the small strokes now?
I've also had the massively severe joint pain, and my Neuro attributes it to the EBv. It had improved a good deal since I have been on the anti-virals, nothing like it was.

I'm not thinking clearly tonight, I might have to wait until tomorrow to see if I can post more and think clearer.
Hugs!

Jazzy

[risnerrose]

My LP came back abnormal.

[Jazzyfizzle]

That is something lady. You know, that is the one thing I am most afraid of doing. :(  Or I would have already asked him to do it, just to know the results. No matter how hard I try, I can't seem to get over the fear of that, and I jabb myself constantly, and in the stomach too. It just the thought of it being the spinal cord you know, weirds me out. Wish I had the nerve.

Jazzy  (I think we are namesakes :)   'Sherri )

[risnerrose]

Prior to the LP, I wished that I had requested the MRI of the spine.  To quote Quix:  "MRI's of the spine:  It would be very unusual to see ministroke lesions in the spine.  Lesions there would be highly indicative of MS."  This would not be invasive, and - should something show up - it would have to be explained by something other than stroke.

Remind me, why does your doc think stroke over MS?

Sherry

[Jazzyfizzle]

Hi Sherry,

Popped back in here for a minute. I did have an MRI of the spine but it was without contrast. Nothing on there, I dont' know if the contrast would have shown anything else.

My doc. thinks a combination of the strokes, Chronic Epstein Barr, and diabetic neuropathy are my causes.
I had an MRi show 2 areas, and they have remained the same as the previous MRI.
My VeP was normal
My Emg was abnormal and showed axon loss

He said my brain does not look like MS to him, and with the normal Vep he seems so sure.

I dont' know what explains my sections of time where things are even worse than the everyday bad, other than maybe the Ebv?

Jazzy

[Quixotic1]

The spinal tap is NOT, I repeat NOT into the area of the spinal cord.  The spinal cord ends at the bottom of the thoracic vertebra.  Below that are free floating neves that are headed to their exits between the bones.  The needle slips into this CSF-filled space down in the lumbar area, usually between L3L4 or L4 L5, the nerves float out of the way, and some fluid is taken off.  It is one of the easist to do procedures I've ever done and I've done hundreds!  Remember NOT into the spinal cord or even very close to it!  Q