Battling A Chronic Disease, Such As MS,While Living In A Rural Area.

It may just be me, but people who live in or close to an urban area have a lot of advantages when battling a chronic disease such as Multiple Sclerosis.  These people have access to hospitals equipped with the latest technology and access to the newest research and treatments.  They may be able to participate in support groups with people facing the same battle and enduring similar challenges which they do.  The person may also have the opportunity to participate in clinical trails.

Unfortunately, I reside in the quickly coming defunct coalfields of Southern West Virginia in a small town divided by a river known as the Tug River.There are 2 hospitals in my area, both very small.  The hospital on the West Virginia side of the river has only 76 beds and was almost closed and converted to a drug treatment facility a couple years back.  The hospital on the Kentucky side of the river has approximately 148 beds.  Like I said, small hospitals.  They are tiny compared to big city standards.  

When it was first suspected I had Multiple Sclerosis, I was referred to a neurologist who practiced  in a WV city two and half hours away.  It was there I had the lumbar puncture or spinal tap which lead to my definitive diagnosis of MS.  However, I never could obtain the results of the spinal tap or any other results of tests performed from this Doctor.  I would have to come back, go to my regular Doctor, sign a Release of Information form.  They would fax this form to the neurologist office and they would fax back any results.

It was my general practitioner and his nurse practitioner who delivered the news that yes, you have Multiple Sclerosis.  My neurologist didn’t get around to giving me this news until almost 2 months after the fact which is why, with the help of a colleague and friend, I quickly located a new Doctor.  

My new neurologist was located in a city of Kentucky which was three and half hours away from my hometown.  Yes, if you live in a rural area such as the one where I reside and you are diagnosed with something like Multiple Sclerosis, you will have to travel to find the best treatment.  

I liked my new neurologist right away.  He seemed very nice, personable and, most important of all, knowledgeable.  Liking your doctor is very important especially if you are battling a chronic disease.  You are entering into a possible long term professional relationship with this person.  You have to be able to feel you can trust them, have confidence in their ability to treat you and feel comfortable enough to be able to discuss anything about your health with them.  The relationship with your Doctor may be the longest relationship you ever have in your life.  The relationship between a patient and their Doctor can last longer than most marriages now days.

Unfortunately, this was not to be in the cards with this Doctor and me.  He was considering retiring in the near future and he advised me to find a doctor who would be able to follow my case long term.  The type of doctor he recommended was an MS specialist.

  “A what?”  I remembered asking, looking from the Doctor to my husband then back again.  At this point, I had been a nurse for almost 18 years.  I also have an older sister who has been diagnosed with MS.  However I had never heard of an MS specialist.  I operated under the assumption there were neurologist which treated neurological disorders such as epilepsy, Parkinson and Multiple Sclerosis and neurosurgeons who performed brain and nerve surgery.  I had no idea they further specialized.  To be honest, I had never given it much thought until that very moment.  

Well, my good neurologist really let me down at this point.  The only MS specialist he knew of in the same city was not accepting new patients.  He started recommending that we look farther north because MS was most prevalent in colder climates.  He recommended to us we try to get an appointment at John Hopkins University or, maybe, Cleveland Clinic.  In fact, he preceded to set me up an appointment at Cleveland Clinic.  

Of course, I went.  A Doctor, who looked like he was barely old enough to be in high school, came in and looked over the medical records I had brought, asked a few questions and watched me walk down a hall before agreeing yes, you have MS.  He shook my hand then my husbands’, wished us luck and walked back out of the room.  We had made a 6 hour car trip for what amounted to a 20 minute appointment just to be told what we already knew.  

When we returned to my regular neurologist and he seemed genuinely surprised that was all they did.  He started suggesting places even farther away such as John Hopkins University and one hospital in Boston Massachusetts.  I just looked at him.  More travel for what could amount as just another 20 minute appointment?  Just so they can tell me what I already knew? 

I appreciate my doctor was trying to insure I got the best treatment available.  However, traveling that far was not really an option at that time.  I had a son at home who was in school and nobody really willing to keep him while I traveled, possibly on a regular basis, to all these different places.  I was already being forced to schedule my appointments around his school schedule 

Had I decided to go through with this, I would have been forced to try to get appointments during my sons ‘ school breaks and, since these places were too far to make the trip in a car, I would have had to shell out money for plane tickets, hotel rooms and meals at restaurants.  Since I am not a rich woman, money was another obstacle for me.

As luck would have it, this doctor referred me to another doctor in the same city as him for treatment of a seizure disorder.  That is right, a seizure specialist.  I didn’t know those existed either.  I had already given up on finding a MS specialist anywhere near me but my husband, always the optimist, asked him if he knew any.  He did and referred me to the MS specialist I still see today.  And get this.  My MS specialist is in the same city as the neurologist I was seeing.  He was just affiliated with a different hospital.  

I would love to say since then my treatment for my MS has been spot on and perfect but that would be a lie.  My new Doctor is still three and half hours away.  It is not like I could simply drop by the office.  Most of the time,if I have any concerns, new symptoms or worsening of symptoms related to my MS, I have to call.  Sometimes when I call, I get to talk to a live person but most of the time, I leave detailed messages.  Sometimes they return my calls but, more often than not, they don’t.  But, since it is not like it is going to be raining down MS specialists where I live anytime soon, it will have to do.  

So, tell me your opinion.  Do you agree it is harder for a person living in a rural area to obtain access to specialized and optimum healthcare or is it this hard for everyone?  I will be very curious to  read some of the comments.  😁 Bye for now.

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