optic neuritis


It’s time for an update as a lot has happened in the past month and a half. Where to start…

Charlie and I have successfully moved from Clearwater to Orlando. Unfortunately, we do not have jobs yet, but we will soon, hopefully…if anyone has any leads in the metro-Orlando area please send them by my way. Job leads dealing with computers and communication (pr, event planning, writing) are always appreciated.

The new apartment is pretty nice. It’s called Vintage on the Green or Knightsbridge depending on who you ask.

The only downfall is that we are just 2 miles from a coal power plant.
I haven’t found any news articles that say it is a health hazard…yet…but to be safe we are not drinking the water at my grandmother’s request. :o)

 

So, you may be asking why I left a good paying job and moved to Orlando? For starters, Charlie is finishing up his bachelors at UCF and so it was necessary to move as we share one car and that commute would have been brutal. AND my job was affecting my health. The politics (and I mean more than the usual …even more than academia) and CONSTANTLY being thrown under the bus were causing undue stress and my body was reacting. At the same time, I was undergoing tons of MRIs and testing to see why I had lost my eyesight in my right eye. I looked like a pirate for a while there. Turns out that I do have Multiple Sclerosis and the stress from work was causing me to replapse and could possibly cause permanent damage. For right now, this blog will be available only to those people on the list. lol, that sounds like I own some schwanky night club. Employers can see this if I make it public and I don’t want anyone to think I am incapable of doing the job. I have dealt with stress almost all of my 27 years and I know my limits. I was doing my job well, my boss can atest to that, but I was getting sick and so something had to give.

Well, now I am on “Rebif” medication to control the MS and hopefully it will also control any future relapses. All of the MRIs did not show any lesions, which is fantastic and which means that I am catching this very early. The doctor diagnosed me based on the fact that I have oligoclonal bands in my spinal fluid and have experienced two different symptoms unexplainable by anything else – loss of use of my legs and loss of vision in one eye (optic neuritis). There have been no long term studies on the effects of this drug so we will just have to see where it takes me. I’m positive though and I appreciate all the support that my friends and family have given and will continue to give. I took my first dose yesterday and did not receive any side effects. Yay!! The drug has an auto injector device that reminds us of the injector things in Star Trek so the 3x’s a week injections aren’t so bad. :o)

Well, that’s pretty much the biggest parts of the update. I will write more when I don’t have a pressing need to find a job.

Oh! And please feel free to ask any questions about MS if you would like. I’ll post a short video with general information if you want to get an idea. Hope all is well with everyone out there!

Testing
IVs
MRIs
Spinal tap
More testing

Getting sick sucks and that’s the truth. The team of doctors not knowing what you have (or knowing and not telling you) is worse.

Here’s the deal real simple – I went completely fuzzy in my right eye for 2 weeks+. And by completely fuzzy I mean I haven’t driven a car because I can’t see that well and couldn’t read the top line of the eye chart when 6 inches in front of me. The computer screen at work was a pain to deal with as I would get headaches trying to read the text using both my eyes so I had to wear an eye patch while this gets sorted out…did I mention I work with computers all day? This makes working all the more difficult and frustrating on top of the office politics and general stressful work environment.

I had previously blogged about pain in my wrists and hands as well as numbness and tingling in my feet and fingers. The doctors shrugged that off as carpal tunnel syndrome and attributed the pain in my legs/feet tingling to mild spinal stenosis which they found with the first MRI. I was scheduled for physical therapy (which I am in now) and have only been to one session but the pain in my hands and wrists is better. I’m sure I have a mild form of carpal tunnel, who isn’t going to have that in this day and age, but the sudden visual loss has the doctor’s stumped. Officially, the only thing I have been diagnosed with is Optic Neuritis. But do me a favor….google “optic neuritis” and check out the first few results. You’ll see the full effect of this diagnosis by the first few hits.

No, I don’t feel doomed. No, I’m not depressed. I’ve got awesome support with Charlie and family and friends, I know. But I also know (from very personal and real experience) that if they do find something on the next MRI (scheduled for Thursday) or if not the MRI then the spinal tap then I’m in for a long haul of medications, ailments and possibly (and hopefully only temporary) paralysis. Fun stuff, eh?

So what do I know?
I think it’s really too early to tell but all roads do seem to lead to Rome. My legs went out on me a year ago for a few hours and I couldn’t walk. That was my first wake-up call. My mother had clean MRIs for a long time and the only way they were able to diagnose her was through a spinal tap. I know that there are new drugs out there that weren’t available in the 80s so there is progress in the field. I know that these new drugs are all injection based so I best not be afraid of needles if it comes to that. I know that the doctor put me on IV steroids (typical Optic Neuritis treatment – SoluMedrol) and my eye got better but is still fuzzy. I know that it isn’t the end of the world and I may just get better placement in lines at Disney – priorities you know! I also know that if I do have MS I’m going to be a fighter. There will be good days and bad days. I know that no one, except those going through it, will understand the pain and frustration fully. I’ve lived with my mother and seen the effects this disease can have at its worst and I’ve seen the effects that giving up to it will cause. Unlike others, I get the chance to go into this with open eyes and more of an understanding than most newly diagnosed. I know that my friends are going to have questions and, as always, I’m ready to answer what I can.

-Is it hereditary? They don’t know but there is a 10 percent increase in your chance of getting it if you have a family member with it. That’s a small increase in the grand scheme of things but enough to mention. Also, I do not plan to tell me mom either way it goes. It’s a tough decision but she has a lot she is going through herself and I know her…if I am diagnosed, late at night when no one is watching she will cry and blame herself although she did nothing wrong…and that breaks my heart in so many ways.

-Is it contagious? lol, no.

-How do you get it? Your guess is as good as theirs. There is a belief that at some point in your life you come into contact with an unknown virus which stays in your system until it is called into action. I’ve heard and talked to many people who, like me, believe that extreme stress (ie – giving birth, car accident, etc…) triggers the MS to surface.

-Are there any breakthroughs? Medical science has progressed but not that fast. Next to Polio, MS is still the leader in young adult paralysis. As far as science can tell it is an autoimmune disease – file that with Rhuemetoid Arthitis, Graves and Lupus. Your body thinks its doing the right thing but ends up attacking itself. So you see, my confusion on where I last left my keys (or my glasses) may be an innate part of my general brain confusion which I can’t control. At least, I like to think of it that way :o)

Will you be different the next time I see you? I have no idea. Sorry for all the vague answers but everything is always going to be up in the air. My back will hurt sometimes and it may get hard to walk at times so I may end up using a cane. My eyes may come and go fuzzy so I may have an eye patch. As I said before though, I haven’t been diagnosed with anything except Optic Neuritis and if I am diagnosed with MS there are treatments that I can try …so hopefully, no I won’t be different on the outside and the inside is pretty strong too. But hey, we all have our limits sometimes.

In summary, I just wanted to send out an update for being MIA…lol, in case anyone noticed. I’ve done a great number of wonderful things and accomplished a lot of goals already in life. I’ve met someone who makes me exceptionally happy, planned weddings, conducted major events, lived in NYC, worked for the government, made more than $45K, taught a class, marched in college, participated in plays and graduated from UF – all personal goals done by age 27. There are still lots of things I want to do like finish my thesis, teach some more, live in Europe, own my own business, pop a kid, the list goes on. Whatever I have is just a speed bump in the road telling me to slow down and take it all in, take care of myself and others and not let the stress of living in this world get in the way of being in it.

Peace to all. I’ll update again when I have more information.