The Meds

I was givin a choice of which medicatin to start with.
The orginal nuroligist had told me a lot of people dont choose one untill problems start to arise. Screw that, I wanted to start something BEFORE things got worse.
Out of the three choices I was given, I choose Betaseron. Its an every other day injection, but the best part that I looked at was that it didn't need refrigeration unlike the others.
The 12 volt cooler I had in my truck wouldn't keep the other meds cold enough, so Betaseron it was. All three medications are self injections.
I eventually left that neurologist for a new one. For a second opinion, and I was able to understand what this new doctor said when he spoke. This new one tested me for everything but MS, but everything came back normal.
I stayed on Betaseron for  about a year. I took myself off of it for 1 month just to see if things changed, they didn't and I caught hell for not taking the injections so I started again. After a couple of relapses and IV steroid treatments, I was given a choice for something new. Either Rebif or Tysabri. Tysabri was the strongest so I went with that one. Tysabri comes with a risk though. The risk of contracting PML or Progressive multifocal leukoencephalopathy. PML is a rare and usually fatal viral disease that is characterized by progressive damage or inflammation of the white matter of the brain at multiple locations. The risks didnt bother me. I wasn't scared.
It was on Christmas eve of 2009 my doctor sent me down to the Mellen Center at the Cleveland Clinic for a second opinion on weather or not I should start this new medication. Immediately I thought, if he wasn't sure, then why am I still here seeing him?
My first infusion, reading my garden book.
I seen Dr. Jeffery Cohen that day and he seen no reason why I shouldn't be on Tysabri. He asked if I wanted to continue my care there, and because the other doctor is closer I decided to stay with him. Now I feel that was big mistake on my part.
The Mellen Center is a wing of the clinic that specializes in nothing but Multiple sclerosis. I should of started my care there when this all started. I feel if I did then I wouldn't be as bad off as I am now. I might even be working still.
Through all this I did numerous physical therapy visits starting in January 2009, which helped improve balance and coordination. Eventually I started on Amprya. I thought with the mix of Tysabri and Amprya I should be fixed enough to return to work, or at least lead a normal life. I had a couple of falls that tore ligaments. All this within weeks of the start of Amprya. (Amprya is used to improve walking in people who have multiple sclerosis Dalfampridine may be used alone or with other medications)  Well the Amprya never worked like I though it would, and when the Tysabri infusions started I was able to walk in and out. Now I need assistance. First with a wheel chair now with a rollator walker and I don't see things improving anything beyond that.
In October 2010  I did go from my current neurologist to the Cleveland Clinic. I followed the opinion of a friend and requested the doctor he is currently seeing.
My last Tysabri infusion.
In the winter of 2011 my current doctor informed me I have infusion #24 coming up in January of 2012. The odds as they stand now of contracting PML are .5 out of 1000. If I continue with Tysabri the odds go to 2 in 400. So on January 11, 2012 I did my last infusion of Tysabri. My favorite girl was with me for the first one. On my last another favorite girl was with me..via Skype.
The plant now is to start on a new oral medication called Gilenya (Fingolimod is used to prevent episodes of symptoms and slow the worsening of disability in patients with relapsing forms (course of disease where symptoms flare up from time to time) of multiple sclerosis)There has been one death reported on Gilenya already. Gilenya was just approved by the FDA in 2010.
And finally, here is another mistake, Dr. Cohen is the one now the one who is leading the stem cell research in Cleveland. With one patient already in the study and showing improvements, If I had stuck with Dr. Cohen I may of had the chance to be included in the study instead of being on a waiting list of well over 600 people..Im sure there are more since I called in the fall of 2011. The study wont be complete for 3 years now. Who knows what kind of condition I'll be in when or if I get my chance.

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