Saturday, June 6, 2015

Background

I'd like to start with some background on myself and my MS.  I am a 38 year old Male ms patient originally diagnosed in January of 2004.  I have most likely had it since the late 90s.  I experienced my first symptoms in 1999 when I had a lazy eye.  I went to a neurologist and ended up doing a cat scan and got a prism put over my left eye glasses area to correct it.  I thought that was it but over the next 4 years more symptoms would begin to manifest.  I had a lot of heat tolerance and gait issues over this time.  Then in January of 2003 I fell and broke my ankle on both sides on my left leg.  I ended up not going in medical care so it healed wrong.  I had to have surgery to re-break the ankle and reset the healing time back another 3 months.  After a total of 6 months I still was not able to walk.  It went on for over a year and finally I saw a doctor who found a tremor in my foot and she sent me to a neurologist.  He immediately narrowed it down to 2 diagnoses.  A brain tumor or MS.  I was admitted into the hospital and got an MRI.  Sure enough they found lesions in my brain that confirmed the MS diagnosis.  I ended up getting 5 days of IV steroids and then spent a month with in patient physical therapy.  After relearning how to walk I started on a walker.  I then graduated to a cane. My first neurologist was a firm believer in treating the disease aggressively and I have taken that philosophy to heart.   My first MS drug was Avonex and I took this for a couple of years.  It was not very effective and had the flu like symptoms which is common to interferons.  I then finally was able to get on Tysabri and this got me off from disability and to work full time again.  I ended up taking this for 7 years until it stopped being effective.  During this time I had a PML scare and had to sweat out the weekend waiting for an MRI to see if it was this diagnosis or not.  Luckily it was not and I got IV steroids again for a relapse and then started on Tecfidera as a stop gap medication until I was to be taking Lemtrada.  This was the start of a very interesting journey that I will detail later.

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