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June 23, 2010 / multiplesclerosis1209

Hello world!

I’m just a girl with Multiple Sclerosis who would like to see more real information about the disease on the internet.  Information that people may be afraid to share about their personal struggles living with MS.  This blog is going to be my journal of my journey of living with MS.

It all started about five years ago.  I was walking a dog and I felt like I needed to go to the bathroom.  I knew that there was a park nearby that had a public restroom so we headed in that direction.  Before I could get halfway there, I felt an urgency that I had never felt before.  I walked faster but not fast enough.  I pooped in my pants.  This was a little disheartening.  I had had bladder issues my entire life…urgency, frequency, constant bladder infections…but never had had problems with containing my bowel movements.  This happened again maybe three times over two years.

The urgency with my bladder started to get more bothersome so I went to the doctor.  She put me on Oxybutynin for my “overactive bladder” and when I told her about my bowel trouble, she put on a rubber glove and put her finger in my anus.  She concluded that the muscles were fine and she told me to eat more fiber.

A couple years after that, around 2006, after more and more frustration with my bladder control, I went to see a Urologist.  He told me, “Unless you have MS, you have an Overactive Bladder but since your vision is fine, it’s not MS”.  I stayed on the Oxybutynin for awhile longer but thought that it was making my legs stiff and shaky so I stopped taking it.  That Urologist put a bug in my ear about MS so I started looking into it a little.

Fast forward to Summer 2008.  I ended a four and a half year relationship and my stress level was pretty high.  I lost a bunch of weight, didn’t have much of an appetite and generally felt a little tired.  I chalked it up to stress.  By the end of the year I had settled into single-hood in my own apartment, had adopted my third dog and was feeling a little better about life.

In the beginning of 2009 I turned 30 and had decided to stay single for a year and do some soul searching.  The relationship I had been in for over four years was a bit suffocating and I wanted to venture out and figure out what truly made me happy.  I went to all kinds of workshops and classes on topics that would have gotten me laughed at by ex.  I was flying pretty high.

In October of 2009 I went to a tattoo convention with my best friend to get matching tattoos.  We chose a pretty little design and had them placed just above out hip bones.  This area should be a very sensitive area but I almost fell asleep during mine.  My BFF said hers was the most painful tattoo she had ever had and I said mine was the least painful.  I didn’t think anything of it.

In November of 2009 I had a dear friend commit suicide.  A week later my truck broke down in the middle of the highway during rush hour.  A week after that, my truck broke down again this time on a side street but during work on a day that I needed to rush home to get to my second job.  All of this stress piled up and my legs became weak…for several days.  Now I was beginning to worry a little.  Over the course of October and November my bowel and bladder problems has become worse.  Much worse.  I talked to my chiropractor about what was going on and he looked concerned.  He called some of his spine doctor friends for advice.  They told him that I needed to see a Neurologist and the fastest way to do that was to go to the ER at one particular local hospital because they had a Neurologist on staff in the ER 24-7.  The next night I accidentally left my heat up too high in my bedroom while I was sleeping.  I woke up to turn it down and my legs buckled under me and I had to crawl to the heater.  I went to the ER the next night after work.

The ER took around eight hours but I got to see a Neurologist.  I told her that I was pretty certain that I had MS and wanted an MRI.  At this point I had done my research and was convinced that I had Multiple Sclerosis.  The Neurologist informed me that since I wasn’t having any symptoms in either of my arms that it absolutely could not be MS.  She then explained to me how the brain functions and if the brain is affected that it would affect an entire half of my body, left or right.  I felt more knowledgeable about MS than this third year resident of a “doctor”.  This Neurologist was rude to me and I hated her but at least I got a green light for an MRI.

I waited a few days for the hospital to call and schedule my MRI and also my follow up appointment with a Neurologist to go over the MRI images.  When they tried to stick me with the same bitch of a doctor that I had in the ER and I contested.  By being a little pushy, they gave me an appointment with one of the top Neurologists in the state who normally doesn’t take new patients.   At my first appointment with him I told him that I had Multiple Sclerosis.  I think being up front and unafraid helped me get a speedy diagnosis.  After looking at my images, doing some poking and prodding and tapping and scratching and asking me a bazillion questions he looked at me and said, “I think we both know what is going on and I’m going to do my best to get you into the MS Clinic”.  We then scheduled my lumbar puncture appointment so that he could give me an official diagnosis.  Apparently there are i’s to dot and t’s to cross before a doctor can give an official diagnosis…I would have gladly skipped the lumbar puncture but it had to be done.

I felt relieved to have my diagnosis.  At least now I knew what was going on and I could move in the right direction and start to get treatment.  I am learning that some people go through hell to even get their diagnosis so I feel fortunate.   I saw the same Neurologist for a couple months and then I was able to get into the MS Clinic.  I love my doctor there.  She is expensive and realizes that I don’t have insurance so she doesn’t over do it with procedures and appointments.  She would like to do a full MRI but says it would cost upwards of $5000 so we are going to wait until I am insured.

So as far as meds go, here’s my list:

Baclofen for leg spasticity and spasms: 10-50mg per day. I average 30mg a day

The only side effect is weak legs if I take too much

Oxybutynin for incontinence: 10mg per day

The only side effects are dry mouth and dry nasal passage

Rebif injections (Interferon beta-1a subcutaneous injections) three times a week: I inject myself with 44mcg three times a week

The major side effect with this is severe headache if I am dehydrated.  I get minor bruises at the injection site and the medicine burns like fire when it goes in.  I use an auto injector  which makes it easier but the medicine goes in faster which burns more.  There are a few areas that I get to choose from for injections and my stomach is my favorite spot.  The squishier the area, the better.

Plus a handful of supplements/vitamins like 4000iu of Vitamin D everyday, CLA and L-Carnitine and Ibuprofen as needed for pain and to prevent headaches with my injections.

Today I am in an acute relapse.  My doctor would like me to do a steroidal Solu-medrol infusion three days in a row to make me feel better but i can’t afford it so she is giving me some steroid pills instead.  I pick them up tomorrow and I hope that they work.  Starting July 1st, I will actually have insurance but that’s another story for another day……….


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