MS?

[klesniak]

Sorry this is long but I am at a total loss with the past 3 years of poking and prodding and still to no avail no DX. One Dr. says I have MS, but he wants to see active lesions on the MRI. My other Dr. says its not MS since the spinal tap and MRI doesn’t show MS.
I’m really getting to the point of exhaustion. I’m sure many of you all are. I get electrical shocks in my hands in feet, through my head, and in my eyes. My vision has been 20/20 for years,  I had to be seen awhile back because out of the blue I was getting double vision. Then in the past few years I started loosing my vision at times and seen an eye Dr. who said I had a stigmatism, then a recheck and I was fine.
My hands get a numb feeling where I can’t feel things I am touching.  At times I get an excruciating pain from the top of my head or in my eyes,  these pains bring me to tears. I get real clumsy, trip over my feet a lot, fall up the stairs, I’ve fallen over sideways several times. My cognitive  gets real obnoxious; I end up dialing a telephone number many times because I can’t get it right, I’ve forgotten my boss’s name, I took a math class and the teacher asked me “where did those numbers come from?”, I have no clue. I just put numbers down even though I am looking straight at them they turn out different in writing.  A few months ago I began getting vertigo, no known sinus problems, headaches, or ear problems that could associate the vertigo with.  Another odd pain I had is my jaw would get so tired just chewing.  
I have a new problem; at night my legs are in pain, it’s hard to describe, they hurt all over. They feel heavy, throbbing type, and I move around and I can’t seem to get comfortable. Nothing but pain meds takes away the pain.
All of the symptomsl come at different times, some symptoms are together some are alone.
I’ve had a spinal tap – came back clear and without question
Evoked potentials – Showed slowness in the left leg.
1st MRI - MRI BRAIN - 7/25/04

IMPRESSION: Scattered multifocal, predominantly subcortical areas of demyelination or gliosis in the cerebral hemispheres. This is somewhat unusual for small vessel chronic ischemic disease in a 37-
year-old female. Therefore, although the distribution of the lesions is not characteristic of multiple sclerosis, some type of demyelinating disease cannot be excluded. The lack of enhancement
of these lesions suggest that these are not active plaques.

FINDINGS: There are multifocal, predominantly punctate areas of T2 and FLAIR hyperintensity seen in the cerebral white matter. These appear in a predominantly subcortical distribution. They do not
have the typical periventricular or pericallosal distribution seen with MS. Following intravenous contrast administration, there is no evidence for significant enhancement of any of these lesions.

2nd MRI -
MRI OF THE BRAIN, 05/26/2006: IMPRESSION:
1. Multiple foci of T2 hyperintensity, mostly in subcortical white matter of both hemisphere. Two tiny foci are seen in the pons and a rare focus in the central white matter of both hemispheres. None demonstrate mass effect or post contrast enhancement.  The appearance is nonspecific, and not particularly suggestive of primary demyelinating disease. However, consider MRI of  the cervical spine if warranted. Other possibilities include post/para infectious demyelination, ischemic lesion associated with migraine headaches, vasculitis, etc.
FINDINGS: There are several scattered foci of T2 prolongation signal, most involving subcortical white matter, and none with mass effect. The corpus callosum appears normal. Two tiny solitary T2 hyperintense foci are noted in the pons.

[Quixotic1]

Hi, and WELCOME!  You deserve your own thread with this history (and what appears to be a rather dim neuro)  If you would cut and paste this to the front page you will get many answers, including from me.

Karrie - we never heard from you again.  Did I chase you away?  I'm hoping you spent the last weeks getting in to see someone on the mainland.  I love to hear from you, though.

Quix

[angeline59]

I've been following this thread, although I swore last night that I was just going to give up on any more pursuit of a DX. I've got all the classic clinical correlations for MS, two MRIs 6 mo. apart showing numerous lesions in the cortical and subcortical regions, but normal cervical spine MRI. Parasthesia everywhere, always; paroximal pain in different locations that last up to a couple of hours (this occurs every 3 days or so); gait problems, generalized weakness on the right side; word search issues; migraines w/ aura (sometimes 6 days in a row and as many as 4 in one day) This has been going on for the last 3 months. Before these constant sx took hold, I had excruciating paroximal pain in specific areas (l. big toe joint in 2003 that lasted for 2 weeks; in 2004 costochondritis in l. ribs that lasted a month; in 2005 l. wrist for a week; in 2006 costochondritis again for 8 weeks). My GP blew it off as 'aging' in 2006 (I was 46 then). I finally insisted on an MRI when the numbness/tingling and electric shocks started in my l. leg in spring 2007.
First neuro won't diagnose w/o an LP. I went yesterday for a second opinion, and was told to quit 'educating' myself, and that I didn't have the classic finger-like form of lesions. He suggested that complicated migraine could cause all of this pain. I've read that migraines can cause parasthesia in the arms/hands, but nothing about legs, feet, torso. Neuro recommends Lyrica. I agree that I need to be on migraine preventative and know that this can help with the parasthesia, but can this all be simply from migraines????
Thanks for any help!!

[Quixotic1]

Aloha, are you still with us or did my ponderous tome wear you out?  Sorry, I am longwinded.  I lost my ability to be succinct with the MS.  Q

[Quixotic1]

Your EP showed a slowness in nerve signal velocity from a limb.  I assume that was an SSEP - SomatoSensory Evoked Potential.  Highly inidicative of MS.  Did they also do a Visual Evoked Potential?  When were these done?

Spinal tap completely clear.  25% are in definite MS at diagnosis.  Eventually 90% will should some abnormality.

The second MRI of the brain shows "multiple" lesions within the white matter and now one appearing in the brainstem.  Okay.  They are on the increase.  At this point you should have had an MRI of the cervical and thoracic spine with and without contrast.  You should have also had blood work to rule out the other things ehich can cause white matter disease and may mimic MS.  A workup for autoimmune disorders which can cause a vasculitis in the brain.  Tests for syphillis, HIV, HTLV I & II, Lyme disease (though Lyme is less known in the tropics), and for things that cause mini-strokes.  Things that cause abnormal clotting such as Hughes Syndrome (antiphospholipid  and anticardiolipin antibodies) Lupus anticoagulant, glycoprotein 1c???,  Angiotensimn Converting Enzyme.  Someone should have been looking for why you have increasing lesions on the brain.  (By the Way - An "increase" in the lesions, like the new one in the pons, indicate that at some point in time between the two MRIs the lesions were "new and active;" does it not?  Does your neurologist have a brain?  (I told you I would get to the disparaging remarks)

ATTENTION SOAPBOX ALERT - Stress does not cause one to lose all sensation, fall over sideways, suffer excrutiating bouts of pain and lose temperature sensation!  You all may read that sentence again.  Stress may cause one to be worried about their body falling apart, sensations already there may become amplified or exagerated.  It may interrupt slepp and increase fatigue and depression.  Any doctor that wrote off what you have told us is a weanie and needs a good roasting over a bonfire with lots of cheering accompanying.

END ALERT

I'm sorry you had to endure that.  Many of us have and it is painful, humiliating and serves only to destroy what little self esteem we may have left.  A doctor's Oath begins: "First do no harm..."

When you see the doctor on Friday you really need to ask for a few tests.  If need be they can be scheduled.  You need a visual field test.  You need a color perception and saturation test.  You need a fundoscopic exam (dilated pupils and an exam of the health of your optic nerve.)  And you need a VEP, Visual Evoked Response if you haven't had one in a year.  Demand these.  Tell them it has been suggested that you might have had Optic Neuritis and MS is being considered.

If the doctor tells you your optic nerves look fine, this is good, BUT IT DOES NOT RULE OUT OPTIC NEURITIS.  50% of people with ON have normal discs as seen during fundoscopic exam.  Okay?

Do yo have friends or family on the mainland?  Where were you going to look for a specialist.   It should be someone that you could visit periodically. If you have no preference I suggested UCSF MS Center.

Well, not exactly an epic, but we covered a few things.

You homework is to read those threads and answer my question.  Oooops, I don't mean to sound so imperious.  But, this is a topic that needs a lot of info from you and into you.  But, we try to make it fun.  The storm you witnessed is a rare event.  We are almost always congenial, slightly wacko, and happy.

BTW - By having such dense, dismissive, dumb, doltish, neuros who suggest that this was all STRESS, you are invited to join our Greek House, Hypo Gamma Chondria.  We have weekly rootbeer keggers on the beach.....hmm.....you live in Maui - Hey! Everybody!  We have a new beach for the weanie roast.  Karrie will bring her defective neuro's (for raosting), Kristen has the Hershey's and I have the Graham crackers.  Who has the sticks and the marshmallows?

Saty with us, Quix

[Quixotic1]

Well, I'm back, but my eyes are not behaving.  I'll start talking and asking and tomorrow, if you will read those threads we can have a conversation.  A lot of the info about your various symptoms needs to be put into a timeline of what symptoms happened when, how long they lasted and took to resolve plus whether they resolved.  Some symptoms come and stay, just varying in intensity.  

Back in 2004 - you had the MRI showing scattered lesions which didn't seem to have the classic "plaque" characteristics of being sharply defined and oval.  But the subsortical white matter is a common location.  The radiologist didn't feel that ischemic changes fit your age, the history that he had, if any or the pattern, so a demyelinating process was most likely.  MRI lesions - if you took 100 people and plotted all there lesions on a huge graphic brain, would show a characteristic pattern of being heavist around the ventricles of the brain and in a pattern of radiating "fingers" like tree branches away from the ventricles.  There would be other smaller clusterings right under the outer cortex (gray matter) of the brain called the subcortical area.  Another grouping would be near the structure called the corpus callosum.  There would be a good mattering of lesions then throughout the rest of the white matter, deeper in the hemispheres, in the cerebellum, and also scattered all the way down thru the meduclla oblongata, the pons, a large number in the cervical spine and fewer in the thoracic spine.

But, the catcher is that we are each not a hundred people.  Yes, a certain number of people walk into the neurologist's office with neuro symptoms and their first MRI is worthy of a textbook.  They are the lucky ones.  In truth, MS is a devishly variable disease and the lesions can be ANYWHERE in the white matter.  Yours (if this is MS) are at least in a common location and are multiple.  I had one solitary lonesome lesion deep within one frontal lobe and it was disregarded as normal for my age (53) for two years.  Non enhanced, so as I said earlier , this just means the MRI didn't catch them in their narrow window of showing up active.

From your post I can't place symptoms in order or within their time periods but we will get to that.  You had double vision.  This is a malfunction of one of the cranial nerves, II, IV or VI.  Classic problem in MS.  Times ( assume not momentary?  ) of spotty vision loss.  Did this last 24 hours or more?  If so, very possibly the hallmark presentation of MS which is Optic Neuritis - ON.  This should have been picked up unless you were seeing an optometrist instead of an ophthalmologist.  It can still be tested for.

Episodes of lancing, severe pain, numbness and loss of feeling, called paresthesias are extremely common.  They may move around, but typically when they appear in one place they will last in that location a day or more, often to reappear later or to remain a daily occurence.

The clumsiness can be from several things.  One is weakness in the arms and legs.  Do you find you have trouble with walking longer distances?  or with climbing stairs, eventually beginning to catch your toe on the step?  Do you trip on uneven ground, catching your toe?  Clumsiness can also be from subtle loss of equilibrium - a brainstem dysfunction.  It can also result from poor position sense and not really knowing exacting where your limbs are.  Do you reach for things and knock them over?  Grip them, but drop from an inadequate hold?

The typical cognitive problems in MS are shortterm memory, word recall which can show up as dysfluency in speech while you pause struggling to find ordinary, common words.  Spatial orientation and discrimination suffer as does multitasking.  (It sucks to watch yourself get "stupid" doesn't it?)  We've all been there.

You leg pain may be muscle spasms, Restless legs, or paresthesias.  All quite common in MS.

Have your difficulties come in waves, with periods of stability or feeling well in between?

You already noticed a problem when your body temp rises.  Usually this will only cause a temporary increase in symptoms, but beware.  A good long oak in your favorite hot bath may precipitate a true relapse and may permanently worsen the disease, if this is MS.  My MS neuro, who I trust totally told me even my beloved hot showers are OUT!  It's too risky.  When it is hot outside and you need to travel, cooling garments, things you can wet and wear as they evaporate, staying in the shade, doing outside things early and late.  You must, until you get a diagnosis be proactive in staying cool!

(con't)

[Quixotic1]

I haven't forgotten you.  I'll be answering this this evening.  I'm in Washington State, so a little time later than you.  We'll get you ready for your eye appointment.  I felt bad that I so so blunt about the MRI's.  I hope your tears were those final tears, that someone was finally taking you seriously, and that what you knew - deeply knew - was likely true.  That something IS likely wrong and that all the dismissive doctors wouldn't/couln't take the time to see this.  It's a mixture of validation, elation, grief, anger and fear.  It's only expression is tears.  Most of us have been through those.  They are normal (but, feel really crazy and inappropriate, I know)  I was almost jubilant when the final neuro  (at his first visit) said I had MS.  I was ticked off and depressed later, but after being dismissed for so long, it was wonderful to have my enemy named.  I can't diagnose you, of course.  But, this is an MS forum, you landed here for a reason, and I'll talk to you in the context of MS.

In the meantime, if you would read the blurbs I wrote on the "History of the Diagnosis of MS" and the one with "The McDonald Criteria" in the title, and the thread called "MRIs, Lesions, and Symptoms."  It will help you with my first long post and all my questions.  We will help you navigate through to diagnosing this monster taking over your body - even if it is not MS, the steps are pretty much the same in the beginning.  You're in good hands.

Quix

[klesniak]

Thank you Quix for your input. Sorry this is long. I have to say after reading your email last night I was holding back the tears; it took me hours to get to sleep.  I couldn’t stop thinking about what you said about the MRI. I know deep down something has been wrong and no one listens. It’s been over 3 years; I know MS is difficult to Dx. Although I have demylination, electrical shocks, hands are numb, (Not to be blunt by I can barely wipe after using the restroom), lord help me the days I want to wear my 501’s. I can barely feel the steering wheel when I drive. One day I almost ran over my boyfriends’ daughter because I touched the gas pedal and couldn’t feel it with my foot.  I’ve learned to touch the bath water with my whole leg because I can’t feel the temp, I learned that after burning my rear..:( or 
My story; I had to stop going to med school to raise my son. My ex was adamant about having me at home. I’ve been working as a bookkeeper for the past 7 years because the money was good. While working I decided to go back to school, 20 years after I left the first time.  I am now waiting for the acceptance into the nursing program this spring or fall.
I’ve seen 1 – Neuro Dr. who told me I need to wear a body stocking to help resolve the pain. Then he asked ‘Do you want pain pills?’ No, I just want an answer. So I asked for another Dr. She thought it was celiac. So the Gastro Dr. went through all the required tests and found it’s not celiac. So I seen a 3rd Neuro Dr. whom I see now, the last time I seen him he said ‘well now that your life has changed maybe your symptoms will resolve itself’. I did get a divorce in Dec. and quit my job in July. My symptoms continue to worsen.
So with that; my hands are so bad right now. I am loosing feeling in them. I wrote to my Dr. and told him I am scared and have had enough. Something needs to be done. He’s a great, sensitive Dr. but he still believes that the MRI is the only way to diagnose MS. He put me on gabapentin. It has helped the legs at night, although it has a few undesirable effects, they probably will go away soon.
I am so afraid that I won’t be able to be a nurse because I continue to loose the feeling and sensations in my hands. Numbers can be real difficult. Some days the symptoms are gone and I think…phew… No more problems, all is good. Then one day theeeey’rrrrreee back.
I live in Maui, our Dr’s are limited, my Dr. goes from island to island because Kaiser only has one Neuro Dr. here. He’s the one who told me to wear stockings. I don’t know how the Dr’s determine the results of an MRI, from the radiologists or? We are going to have to go to a specialist on the mainland so we can get to the bottom of this.
I guess what bothers me most is, my symptoms were ignored, and never attempted to resolve them. Maybe my hands wouldn’t be getting as bad as they are now? Who knows?

Thank you so much for your input, frustration is a huge understatement. I just want a Dx for a piece of mind instead feeling like a basket case.

I do have an eye Dr. appt on the 27th. I am going to ask them for a report for the last 3 years. Sometimes I’ve gone in and had a stigmatism and other times I don’t. What started all this was my sight, I couldn’t read things I could the day before. Etc.

[klesniak]

Aloha Jon,

Thank you for the chapter info. I am going to contact them today.

KL

[Quixotic1]

Also, I think you should read the thread called "MRIs, Lesions and Symptoms."  It's on the 2nd or 3rd page, I think.  It explains a lot of what I was saying about the MRI lesions and such.  Q

[Quixotic1]

Hi, sorry I'm so delayed.  Welcome again.  I certainly see why you landed on our site.  I will start off by saying that delaying a diagnosis of MS becasue nothing is active at this time is ridiculous, bordering on stupid.  Yes, I am outspoken and harsh on my fellow physicians.

For one thing in the 22 months between the two MRIs new lesions showed up.  A new, "active" lesion is one that is newly inflamed.  It shows up on the MRI when the contrast is used and lights up even brighter - a process called enhancement.  When a new lesion appears it only shows enhancement for 4 to 6 weeks.  So your neuro somehow thinks he knows just exactly when to order these MRIs so as to catch anything "new."  Bizarre.  MS is known for being completely unpredictable.  Are you limited to this neurologist?  I say, find another one, look at the list (if there is one) from your local chapter of the MS Society.  You can also ask them if there is a support froup that meets and maybe attend a meeting to see who recommends their neurologist.

The lesions of MS can be in ANY part of the white matter and subcortical is one of the common locations.  Diagnosis is harder if you don't have the "textbook" fingerlike distribution of the periventricular lesions.  What this tells us is that your neuro is a dud, (not dude!), dense, dull, defective,.  The lesions can be in any pattern.

Your symptoms are suggestive.  I'll be back on tomorrow to talk about them.  I think you should get a Visual Evoked Response to check for past episodes of Optic Neuritis - ON.  

You might consider being seen at the MS Center at the Universtiy of California, San Franciso.  Outstanding reputation.  One of our members is being seen there on the 2nd of October.

My arms are giving out.  I'll talk to you tomorrow.  Again - Welcome to our group.  It's a good place to land!  Quix

[JonM]

Try contacting your local MS Society chapter.  They may be able to lead you to a good MD there in Hawaii.  The MRIs are usually interpreted/read by the radiologist not the Nuero.

Here is the contact info for the chapter closest to you
418 Kuwili Street #105
Honolulu,  HI  96817
Phone:   [phone]

Jon

[klesniak]

I am trying to find someone who could read my MRI's on the mainland. In fact I am looking for a Dr. that would be willing to see me. I'm sure there are a many.

[klesniak]

Aloha Nanners, Jon & Quixotic,
Thank you for your replies, I greatly appreciate it.
Being caught between Dr's, diagnosis's, etc. looks like its a common thing for MS. What a huge pain its been almost 3.5 years for me. Problem is I live in Maui and our Dr's are not paid well so their is not much incentive to be here. Heck, the policeman get paid $45k a year. Hawaii doesn't value employees they value tourist dollars. Argh!

[Quixotic1]

Hi, I have quite a lot to say about your post and will do so tomorrow.  Tonight I've used up my reading energy.  Til then, Quix

[JonM]

You need expert opinions on these MRI reports.  Keep after it.  Yes it is true that lesions can and will appear on the brain with no appearant disease activity going on.  There are lots of reasons for brain lesions other than MS including trauma from a previous injury (years ago).

An MRI of the cervical and thoratic spine would be helpful, because if lesions were found here then that would go a long way in confirming MS.

Jon

[Nanners123]

I am sorry to hear you are caught between two doctors impressions. Do you have a third opinion in the works, perhaps with a MS specialist?

Keep advocating for yourself. I am sure you will find a great deal of support and comfort from this forum. I can't speak to any of the MRI results except to say certainly sounds like something is going on.

Take care

Nanners