Late-life negative MRI -- symptoms began at age 18

I'm 76.  I know, I know.  At eighteen, I woke with pronounced fatique and sore legs.  I soon discovered I couldn't process activity from different directions on the road while driving.  Although it seemed the leg ache should improve, I realized early on that overall I had a permanent condition.  I gradually learned to pace myself in everything and rest ahead for necessary shopping and enjoyable activities.

At twenty-one I had trigeminal neuralgia, but my neurologist concluded I was suffering from college stress.  Actually, I was completely in my element in a dorm and taking exciting courses at a major university.  I had to sit on my bed to study and rest half the next day after a dance or taxing activity.  I just took it in stride and never discussed it with anyone.  The fatigue and leg muscle soreness have continued throughout my life, along with heat sensitivity--crawling into the house after trying to sunbathe.  Skin sensations.  I've been between four and five on the Kurtzke disability scale--recently learned.  

I taught high school two years, but was unable to do much in the evenings or weekends but rest.  At forty-three, I got my MA in English and was told I could teach at the university if I enrolled in post grad studies there.  But teaching the required courses while attending class, etc. for my degree had been exhausting and I yearned for my comfortable chair and bed.  I'd had to rest after fifteen minutes of typing.  Got five A's of eight, even though I had small memory problems and took courses I was told were too difficult.  So I couldn't continue the unending paper-grading and took a job at a local private school teaching about fourteen students for nine years--everything from grade six to high school courses.  Surprisingly, the workdays were shorter and easier than reading fifty papers a week, standing for nine hours of class--sixty hours total, and walking afew blocks on campus.

I drove the brief distance to school and errands (My husband shops for groceries), using stoplights for safety until I was t-boned by a speeding driver.  He asked why I hadn't put on the brake after he hit me.  Answer--I have very slow reflexes and knew I was at risk and had to be extremely cautious.

My daughter was diagnosed eighteen years ago with Leber's neuropathy, associated in a study through mitochondrial DNA with relatives who have MS.  (Available on the internet--Brain; a Journal of Neurology, v.115, iss.4, pp. 979-989.)  A cousin on my mother's side has a similar retinal disease.  The nerves on my retina are hyperactive, and I have poor night, sun, and snow vision--all associated with MS.  My mother's brother had ALS for more than fifteen years!  I've wondered if it was in fact MS and named ALS because it was established as service-related; he was cared for in a V.A. hospital.

Looking back at an event and a second stress diagnosis-- In my thirties I'd suffered severe disorientation with short term memory loss for about two years, though I had minor memory glitches--not detectable by anyone else--for years.  The second neurologist (no MRI's then) said he thought I had a stress reaction to having two young children.  (BTW, except for feeding and loving both children, I had to rest in bed for three weeks after both births, until I returned to my usual fatigue.)  Still no explanation for all that was happening to me.  

About ten years ago, I was unable to get an effective update of my lenses and hoped cataract surgery coould solve the problem but am still unable to tolerate a lens update.  My eyes are not working properly together.  Though they appear normal, it feels as if they are out of line and possibly moving toward double vision.  The eye doctor  said they seem healthy, but at the time I didn't know to ask about the optic nerve.

Several months ago, numbness in my legs and difficulty walking began with my already limited stride pulling to the left.  A third neurologist ordered an MRI--my first.  I chose a 3Tesla at a premium medical center.  For the first time I'd found a diagnosis that included all my symptoms, a few I hadn't considered as part of a possible diagnosis.  When the MRI showed no lesions after all these years my doctor concluded I do not have MS.  He says there's something wrong in the discs at the base of my neck that could explain my walking.  Then what could encompass my lifelong symptoms and the family coincidences?   I've requested evoked potentials at a hospital even closer.  The topnotch medical center is only about 160 miles away, so perhaps I should've made an appointment with their neurologist and requested my the cognitive tests there?  

I do realize my age is a factor in a diagnosis.  Even the insurance company seems to be questioning why someone my age would be considered an MS patient.  

Unfortunately, I relied on excellent local doctors, and, not knowing about MS symptoms, saw no hope in visiting a major medical center.  I'd done well years ago on an EEG--no surprise--but was not tested for reflexes, at least not to any practical effect.  I'm wondering if there's actually a test for my strange inabilty to mentally muti-task what's coming from the left, right, and straight ahead on the road, which appeared suddenly along with the leg and fatigue symptoms.  It's always seemed strange that I have an amazing memory for almost everything and full recovery from short term loss but driving a car is like trying to juggle six balls at once and failing.

I'm a regular commenter on a well-known (not the biggest) political website and have received nothing but kudos for everyone.  (Of about 130 entries in the evaluated category, only one a book recommendation got no award.)  The serious ones are not available through google, because I have relatives with political jobs.  And quite alert mentally in other ways.  I mention this so it'll be understood that I'm totally compos mentis and would love to reclaim some quality time if I can be treated.  In addition, my husband is going to need my help.  Any thoughts?  Much gratitude.

[Lulu54]

greetings.  Welcome to a great place to learn more.  So much of what you have written resonates with bits and pieces of MS symptoms, but I'm not a doctor so take my word for what it is worth.

Fatigue?  The number one complaint of MS.

Childbirth?  Relapses are common shortly after childbirth - the MS body gets quiet during gestation but then rebouds with a fury after birth.

Age?  Did anyone tell MS there is an age limit?  Not hardly.  But you are going to have to find a neurologist who specializes in MS and has a pair of really bigs ones who is willing to call it at your age.  I was dxd at 54 and others here even older.  We probably had it in our younger years but just never gave the symptoms much thought.

You might want to see a neuropthamologist - their specialization is helpful  We have some people here who were diagnosied by this type ofdoctor.

Also make the neurologist one who works at an MS clinic where the entire focus is MS.
I hope we'll get an update from you as you continue the search for answers.

best, Lulu

[sadie405]

Hi Barb--

First-- no worries, no one could ever read your writing and perceive you as anything but sharp:)

Second---- There are a lot of important pieces to your particular puzzle. You need a good doc who is willing to take the time to sort it all out with you, and not automatically write you off based on your age. (I know-- you can't exactly order one at a restaurant-- if only). Besides an MS specialist, a neuro opthamologist might prove a really helpful place to start in your situation.

Best,
Sadie

[barbbenet]

Thank you for your kind responses & overlooking the typos.  You offer good information and suggestions.  I didn't mention both my regular internist and neurologist were excited about an MS diagnosis until the absence of lesions on a first-rate MRI.  

There is, in fact, an MS center mear Duke where I had my MRI.  I'm considering learning if I could arrange a phone consultation to learn if one of the several specialists would be open to working with someone who has a more-than-typical MS-type history without visible lesions. (My guess is no.)   I have it all--leg spasticity, ongoing cognitive (driving) disability, longterm and new walking event, life-altering fatigue, family and eye history, and vision loss.  If not MS--just lots of coincidence and hard luck?

And, oh yes, after the cataract surgery, my eye swelled so severely, the asst, the nurse, and then the doctor rushed about saying "No macula!"  It took six months to calm and return to normal.  When I'd told the doc who'd done over 100 operations I'd need more anti-inflammatory pre-op he laughed and said everything would be fine.  (He even had a ten-year old high C-reactive notation in my file, which I'd explained was due to muscle inflammation.)  I do believe male doctors tend to be patronizing with women--I mean what could we possibly know?   He added more meds for the second pre-op.

I'd read somewhere the determining factor in diagnosis should not be the MRI but the doctor looking at clinical evidence and history.  My neuro said the neck condition which was probably the cause of my loss of nerve sensation and walking crookedly would not go away.  But crookedness is already better now since my last visit--common with MS, though the difficulty walking and feeling of weights from my teens remains.  (I could click a bone back and forth in my neck for years and have had no pain there, though I have always had neck soreness along the right side off and on since the beginning.  Arm pain and a shorter reach began about the same time as the new walking problem.

It's perturbing that so many pieces allow that MS seems to be a complex of differing diseases, yet doctors fail to allow for hidden lesions or other areas of disorder impacting on the central nervous system.  I know there are doctors who'll treat "probable" cases and some patients' symptoms improve, but custom and politics generally rule.  I wonder how I might locate some of these doctors who are confident enough to step outside the box.  The patient would bear the cost of drugs and treatment and might also need to sign a waiver.  If either of you could direct me to a source for such doctors, I'd be most grateful.

My dental tech yesterday made an excellent suggestion--to send the list of all symptoms and events well ahead of time to any doctor who would see it so he'd have time to consider and not come up with the usual knee-jerk reaction.  She'd experienced a similar problem getting doctors to correctly diagnose one of her children, though she discovered she had more cutting-edge information than they did.  (My doctor, a recent garduate partnered with a veteran neurologist didn't even know there's an FDA warning re MRI and gadolinium for certain patients.)


Meantime, I'm going for the evoked potentials at WakeMed , hoping they'll reveal my difficulty coordinating multiple stimuli on the road.  Sorry for the info overload.   Barb

[Forgetfullkaykay]

Hi Barb -
Your story got me all choked up.  Not for felt empathy but for admiration, your strenght and perserverance is admirable.

A good doctor will treat the symptoms even if he/she is unconvienced of the diagnosis.  If you feel your dr is patronizing to you because of your sex then I'd just move on to another doctor.  I don't at all feel that way about my dr (though I'm undiagnosed) and any dr who treats an illness primarily affecting women needs to bear the utmost respect towards them, IMO.

hang in there girlfriend - and post again as you make progress!

[barbbenet]

Kay--You have such a lovely "voice" here; I'm sure you've lifted more than a few spirits.  Thanks.  "A good doctor will treat . . ,"  I wish.  We're transplanted into a small university/resort town where the medical community is pretty conservative and careful never to overrule another MD.  Interesting that we do in fact have a new woman neuro in town.  I believe I'll first research the suggestion of a neuroopthamologist, though.  

Then if I still have the will, I may schedule a consult with the woman neuro who may not even be fully aware of how punishing the local system can be for individualisttic doctors.  (They've forced out at least two--one a woman--in the last decade or so.)   To avoid an unnecessary D&C and get a non-surgical read on a mammogram, I had to go out of town.

As you've experienced, people just have to squeeze as much satisfaction from life as they can under their circumstances.  The stories are legion of people stating that they would never live under certain circumstances, but in fact most will hang in with unthinkable deficits.  Our beautiful Teacher of the Year DILaw was unable to speak or move anything but her head after an accident yet wanted to live to continue to see her daughter, husband, parents, and friends who visited daily, but the nursing home "committee" decided it was time to let her go after nearly five years of stress to her loved ones and removed her food--for eight long days!  The death panels have always been here.  And the ethics officers are sometimes team players.  

So I've been lucky and I hope you'll be as well.  I'll be interested in reading your story!
                          
                                                                                                             Barb

[Lulu54]

Barb,
Was this the post you were looking for earlier and couldn't locate?
Lu

[barbbenet]

Yep.  Thanks.  And an amazing thing happened.  When I showed up at the ER yesterday--sent by my doctor for a heat reaction--they kept me overnight, probably because of my age, and the woman MD hospitalist said she felt certain from my history--she got the long version--that I had some kind of CNS disease. They all take extensive histories now.  And echoed the advice here that I see a neuro-opthamologist.  She also wanted me to have a spinal tap.  But my daughter said hers before surgery would be too rough for me, and it was at a major NYC hospital.  

Too bad I didn't run into someone like this woman MD fifty years ago.  

Thank goodness for the internet for patients today.       BBenet