As I posted previously, I had a follow-up appointment with my Neurologist yesterday.  I’m not sure what kind of expectations I had up to this appointment.  I know not much has changed, as far as research trials and new medications or procedures.  I had been in contact with my doctor during the months between appointments, due to the appeal process with Liberty Mutual and the conversations with my former employer.  So,  I guess I really didn’t have any expectations.

I had sent him a response I had gotten from a gentleman in the UK which painted a bleak future for me and my disease.  We talked about how the psychical therapy was helping my body and my mind, and how the increases in medications were helping slightly.  But, neither of these were remarkable improvements.  This is when he told me that as of this moment in time, because there are so few people with this disease and the research wasn’t happening, and the trials were not happening, that the gentleman in the UK’s response to me wasn’t that far out of the question.

He said he didn’t want to focus on the negative, but I told him that can handle the good and the bad that may come of my illness or myself in general.  So, my next question was “what do we do now?”.  So we decided to do the only thing available at this point and that was to add a new medication to my resume so to speak.  Along with the high doses of Klonopin that I am currently taking, we are now adding Neurontin (gabapentin) to the regimen.  Most of you may be familiar with this drug.  It was originally designed for treatment of seizure disorders, but is mainly used to treat nerve pain or neuropathy.  It has been used with extremely limited effectiveness in OT patients, but with adding it to my already established Klonopin dosing we’ll see what happens.

The only ray of hope that I gathered from this appointment was, that we spoke about a national trial that is happening in September, during OT awareness month, in Omaha, Nebraska.  We don’t really know what the trials will entail or how we maybe able to get there, meaning financially or physically, but it is “something” to hang my hat on.

So, what are my expectations at this point for today, tomorrow or 10 years from now.  That has become a simple answer for me.  Wake up, stand up and keep plowing forward!  I also said previously that I would write about trying to stay in the now, and I will share those feelings in the next few days.

You may say great, you have positive attitude and say “keep on swimming” as that famous blue fish says.   But, I know my future may look bleak at the moment and my worry for my family is paramount. There is a real possibility that I may be wheelchair bound in 10-20 years, maybe sooner, maybe later, maybe not all.  What I have learned finally in life as I approach my 41 birthday soon, is that I can only control what I can control.  The rest I have left up to God and his forces of nature.  I will keep going to PT, keeping going to counseling,  keep taking my medication regimen,  keep writing, fighting and learning every minute, every hour and every day of my life.

So please keep sharing these blogs on Facebook, Twitter, or email them to whomever you know until there becomes a strong voice for us, the unheard, people with OT.  I don’t care if you print them out and hand them to people on the street, well maybe not that far.

Thank you, have a great day and as always God bless!!

Matt

 

 

4 thoughts on “Appointment update and expectations

  1. I have been sharing your posts on my FB wall. Your faith, stamina, and determination are whatI love about reading these. What upsets me is that you have all of this on your plate. You should not have to be worrying about legalities at this point. I pray that your lawyer can figure out something either with disability or getting your employment straightened out. It’s a shame that all of that can’t be taken care of. Like I said, you have enough on your plate. Praying for resolutions for you and your beautiful family. Love you guys.❤️

    Liked by 1 person

  2. You are such an inspiration! You’re fighting the good fight. May you find peace and comfort!
    Hi to Scooter for me! I love you both!❤🙏🏼🙏🏼🙏🏼🙏🏼❤

    Like

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