Atypical Multiple Sclerosis

I thought I would revisit the beginning of this whole MS. I know I’ve written about it before but I often hear people discussing the problem of getting diagnosed with MS or finding a doc that will actually treat you as a patient and treat you with the respect a person deserves.  Not all of us MSers are lucky enough to be diagnosed with a simple MRi and lumbar puncture.

Along my journey I learned much about MS and how it is diagnosed.  Somewhere along the way a group of neurologists decided that all people with an arbitrary amount of lesions on their MRi and certain results on a Lumbar Puncture WILL be diagnosed with MS. All others are excluded unless of course (here it is) they have documented symptoms lasting more than a year, then they MAY carry an MS diagnosis. This is called the McDonald Criteria.  Yes, yes, I know I am oversimplifying it, but essentially that is the criteria.

Not surprisingly then, we have categories like Atypical Chronic Progressive MS.  Kinda like that Miscellaneous Category in which everything that  doesn’t fit anywhere else, end up.  For all of you Christmas Special followers, consider everyone outside of the McDonald Criteria as living on the Island of Misfits.  We are like the toys that are very useful and fun but not like the others.  If you are keen on Sesame Street than we are the fourth picture-the one that doesn’t belong.  Do you see the pattern, the connection, the exclusion?

The key to getting diagnosed is finding the right person who will listen.  Now this can be a doctor (if so, then most helpful) or a neighbor or a friend or a stranger standing in line at the grocery market.  The more you talk to people the quicker you will find a doctor who is really dedicated to helping people AND who WILL help you with your illness.  Whether you are trying to get diagnosed or trying to find help in feeling better or getting meds, etc.  I think you see where I am going.

While waiting for an MS appointment recently I overheard two people talking.  I don’t mean that eavesdropped as they were sitting next to me in a very tiny, cramped waiting room.  Ok, so I am justifying it.  Anyway, these two women came in together.  One was the patient the  other a friend.  The patient was from Alaska while the other from a little state on the east coast.  And we were sitting in the waiting room on the east coast of the USA.   The patient moved from Alaska to East Coast USA because she had trouble finding treatment, doctors and diagnosis. Her friend knew of the MS clinic nearby and suggested she fly in for a visit.  Well that turned into  diagnosis, treatment, and a permanent move.

When my day were most frustrating in the beginning, I found help in a friend.  When Dr. Frick, Dr. Frack, and Dr. Headupmybutt all turned their noses up at me, a friend pointed me in the right direction.

I learned not to give up but to persevere.  Oh, I wanted to give up.  But friends and family wouldn’t stop bugging me.  I had to keep going.  Now, if you don’t have people like that then find them.  Find at least one other person who will keep you going.  Some people have found help on forums, websites, blogs, etc.

There are a lot of Dr. Headupmybutts out there.  They are the problem, not you.  It is funny because when you have a child most pediatricians will say, “Well, a mother knows,” when you bring in your sick child.  Yet as an adult, when docs can’t find empirical(hard evidence on their tests) then they say “Well, a doctor knows,”.  Stick to knowing yourself.  If you know something is wrong, then keep trying on Doctors like you try on shoes.  You know what is best for you, you know when something is wrong.  You know?