Atypical Multiple Sclerosis

So many people have symptoms similar to Multiple Sclerosis but carry no diagnosis therefore, cannot obtain any medical help.  HOW CAN THIS BE!  First of all  there is no DEFINITIVE TEST for MS.  Let me repeat that.  THERE IS NO DEFINITIVE TEST FOR MS.

According to the Multiple Sclerosis International Federation “unlike many other diseases, there is no straightforward ‘positive or negative’ test for MS and none of the range of tests available to help doctors with their diagnosis is 100 percent conclusive on its own.”

If this is common knowledge then how can neurologists look a person in the eyes and say with certainty YOU DO HAVE MULTIPLE SCLEROSIS or because nothing shows on tests, I CANNOT TREAT YOU. NOTHING MORE I CAN DO.

There is a whole limbo land out there populated with patients people who are suffering.  I cannot say patients because it is easy for some docs to hide behind the object of patient.  Patients are not people, they are the commodity of the business of medicine.  If docs begin to refer to these patients as people then they become sisters, brothers, mothers, children who cannot be turned away.  People must be helped, patients are objects or things.  They are nothing more than the manilla folder containing forms filled out by people hoping this trip to the doc will be the one where real help is found.

If a doc can’t figure out what is wrong or a test to administer in the first few moments of an appointment then it must be the patients fault.  The patient must be mistaken, wrong, or my personal favorite “psychologically impaired”.  

While trying to get diagnosed, dare I say help for my ailment, a friend told me about empirical versus clinical evidence in diagnosing diseases.  Empirical evidence relies on test results.  Clinical evidence relies on observation of patient.  It seems to me that in many instances no empirical evidence may show in regards to an MS patient.  Especially, in Primary Progressive MS as it is currently thought that the axons are effected not the myelin.  So an MRI may not show any white spots or lesions because the damage is below the myelin.

I spent only a year and half trying to get some help, forget about a diagnosis.  I went from a vibrant healthy young woman in my 30’s to a couch bound weak spastic woman in my 30’s within a year.  First diagnosed with seizures even though my EEG show no signs of any seizure, because my first neurologist felt it was seizures.  Seems he was able to diagnose and treat me with seizures without any  evidence on medical tests. After six months he basically said there was nothing more he could do.  

Only I progressively worsened.  I changed my primary care because he told me “not to call him again. There was nothing he could do for me.”  Nice guy, huh.  He even won a best doc award in the area.  WOW! So, my new primary care sent me to another doc.  She seemed much better. Even told me it could take some time to diagnose me, but assured me she could help.

After a full boat of MRIs (brain, c-spine, thoracic spine, and lumbar) and a seven day EEG I followed up with her.  I had hope.  Even if she couldn’t diagnose me after all these tests, she was going to keep trying that is what she said in our very first meeting.  Well by my follow up things must have changed.  The clinic she worked for must have said something because she told me my MRIs were within normal range and I do not have seizures.  Beyond that there was nothing more she could do for me.  When I reminded her that during our first meeting she said it could take awhile but she could help me, she closed my manilla file and opened her office door.  She just stood there while I and my husband left.  

My pcp even sent me to one more neurologist.  This guy was something else.  He lacked any compassion, any understanding, any medical knowledge.  He spent about five minutes reviewing a years worth of testing and doctor notes.  Another five minutes examining me and three minutes letting me know nothing was wrong with me. My husband pleaded with him for help.  His best advice was to see a psychologist as I was suffering from “a disease without any origin”.

Yes, I stood up told my husband we were leaving.  I limped through his office door to the waiting room then back again to let him know that it didn’t matter what was printed on some paper degree hanging on his wall, he was NOT a doctor.  He said he gave us his best advice.  My husband told him if that was his best advice then he should find another profession.

Suffering happens.  Happens to everyone. It will happen to these doctors as well.  Although I suspect they are already suffering deeper than I.  I am surrounded by family and friends lifting me upon their backs in hopes to lighten my load tiny bit.  One cannot act like these docs have with a loving supportive circle of family and friends.  Really in the end it is the people in our lives and the relationships we make that count.

Multiple Sclerosis is a chronic disease of the central nervous system comprising the brain, spinal cord, and optic nerves. There are generally considered four courses or categories of MS-relapsing remitting, secondary progressive, progressive relapsing, and primary progressive. The first three are in the larger relapsing remitting (RRMS) category, while the fourth one is stands alone (PPMS).   PPMS is the only course for which disease modifying therapies are unavailable.  

Although I look like all other PPMS patients I carry the Atypical MS diagnosis because I do not fit neatly into the diagnostic criteria set forth by a group of neurologists who govern these issues. This group of neurologists set forth the criteria because there is no definitive test for MS.  MRIs, lumbar punctures, and various means by which to eliminate other diseases are used when diagnosing MS, BUT these results do not give a guarantee, 100% surety that the disease you are experiencing is MS.  

So, what are the diagnostic criteria anyway?  Well, the current criteria is called the Revised McDonald Criteria which lists several different possibilities set out by the International Panel on the Diagnosis of Multiple Sclerosis.  Sort of like a board of directors deciding a financial plan for their corporation.  Anything decided by a committee usually looks like a Mr. Potato Head put together by a two year old.

As a result many people, I won’t refer to these people as patients because that objectifies them making them seem like a cardboard box, fall through the cracks.  Falling through the MS crack is akin to falling down the proverbial well.  Isolated, stuck, screaming for help without being heard and unable to scale the cold, slippery stone wall back into daylight.

I stated this blog because I am diagnosed with Atypical Multiple Sclerosis.  In 2006 after a year long battle consisting of many medical tests and several callous neurologists I finally found a compassionate doctor who was willing to work with me.  By the autumn of 2006 I was diagnosed, however, we keep looking for answers.

Having a progressive form of the disease is isolating.  Most of the information about MS speaks to Relapsing Remitting MS.  All of the disease modifying meds are approved for RRMS.  The idea is that 85% of patients have RRMS so therefore most of the money, research, time, energy has been in that area.  The latest numbers show about 450,000 people in the US suffer from MS.  That would be about 382,500 RRMS patients.

But 67,500 people suffer from PPMS.  We are told that because we are only 15%, we should not matter.  How many different meds do RRMS patients need?