#optical neuritis

[blackbird-brewster]

On a scale of the worst pains I've ever dealt with, I rank optic neuritis right under complex stage IV endometriosis.

I am so miserable. I have to wear my rx sunglasses all day and keep my curtains closed and turn all the colour and brightness settings down on my devices. And that barely helps.

Currently on day 2 of a 18-day course of oral steroids. Taking 1000mg daily right now and it has barely done anything for the pain.

Having a massive hour-long meltdown yesterday didn't help matters. 😩

95 days of medical mystery hell and no one can give me any answers as to why.

I know it doesn't do me any good to lament over things I can't change, but fuck, not a moment has gone by that I haven't regretted my choice to have surgery. It's not like I did so without serious consideration.

I couldn't stay on my previous treatment indefinitely, and this seemed like my best option. But out of all the possible side effects i discussed with my surgeon, no one could have forseen the drastic, life-changing, impairments I've developed post-op.

My gynae surgeon is literally so perplexed and horrified, she seriously told me this could wind up being a case-study into the rare complications of surgical menopause in people under 40.

First, we have to figure out what's actually causing my cognitive decline and nervous system chaos.

[ladywithms-blog]

MS Secondary Conditions

MS Secondary Conditions

There are secondary conditions that can be attributed to Multiple Sclerosis; you could have some or none of these extra conditions… But please do not be concerned that you will develop these, it is just worth knowing about them if nothing else.

Noise Sensitivity 

Noise Sensitivity scientific name Myoclonus, are you like me easily startled by noise? Any noise it seems……

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[ilovethethought]

fragments from the thoughts... part three

For anyone who does not know how the eyes are affected by optical neuritis, allow me to share some of the residual symptoms that i had experienced nearly one year after my initial bout with blindness... My eyes continued to be extremely light sensitive- not only did it hurt behind my eyes in the sunshine, but the glare of the sun did not allow me to see clearly more than four feet in front of me. when i would get fatigued- and walking even three blocks was enough to make me breathe hard and fast- my eyes would go blurry and at times i would experience double vision. The year 2004 for me was a drunken haze, and as i continue to share stories here, that will all become clear... i hope.

May 2004

“That one short week of August the 25th was all the time I had with Matt before being hospitalized. That Monday night on the stoop with him was the only night I could clearly see his face until running into him randomly a half a year later. I did not write in any journal that week as my eyesight swiftly faded from me. My mind is almost completely devoid of all detail of my time with Matt before driving home from New Jersey that weekend on the 31st of August.

            I know that Matt and I had slept together once, maybe two or three or four times that week. He wore some sort of chain or medallion around his neck that I enjoyed pulling tightly on while we made love. The cloth bracelets made of rope or some sort of string that he had tied around his wrist were loose enough that I could slide a finger or two between them and his skin and almost feel his pulse. His room had paintings, drawings, and other various works of his art randomly placed on the walls. I remember telling him that I could not wait until I could walk into his room and actually see his work. That day never arrived for me.

            My memories of Matt feel like a surreal dream that only truly exists in my mind and in my heart. The first time I ran into him since those early September days after my release from the hospital felt quite the same. I walked out the revolving doors of the bank on Broad Street and my eyes were drawn to a familiar figure, dressed all in black, sitting on a ledge with a black dog stretched out by his feet. Feeling less than confident about my appearance, I walked towards this figure. “Matt, hi… how are you? It’s really good to see you.” Is all that my mouth could utter. The sun was blazing down and I was overwhelmed from its brightness, which made him appear as an illumination or a mirage. It was a Monday, the nineteenth of April and it had been almost exactly six months since we had spoken last. In my journal I recorded the following:

I saw Matt Lizard today…it was surreal. “it’s good to see you” “how are you” filled with superficial words as I drew blank. I wanted to say so much. So I just pet lizard and stared at Matt- blank… I don’t think I was ready to see him yet. Not physically. Not mentally. But emotions arose, and yes, I miss him. I wish, I wish, I wish I acted differently when I had the chance. I could have found happiness again, with him. And regret sinks in, but it was good to see him. Like a dream, but I messed up again. I saw Matt Lizard. What will the warm weather bring next?

Soon after that my mind, as well as my writing was filled with thoughts of Matt…”

[ilovethethought]

A Preface

Soon I want to tell my story of the two M’s. Both truly remarkable people… both truly inspirational people. It is more than likely that neither of them know, or would even imagine, the influence that they had over me at the time… the influences that still drive me in some way…

Some background information is necessary here before I go into my stories…

A common first onset of multiple sclerosis is a condition called optical neuritis – typically this occurs in one eye- the nerves behind the eye are “attacked” and swell and cause vision disturbances… blurred, double, even blindness.

Well, in August of 2003, my eyes were attacked- yes both eyes. There I was- 24 years old- and blind as a bat!

After the fact, people always said “Oh, my gosh, that must have been so scary!” but honestly, at the time I was going through it- the blindness, I was not really as scared as one would believe… and that is really all because of a guy named matt.

… matt lizard as he was known- he had a dog named lizard- that is where it came from, I would assume. I have notebooks just filled with stories of, and yearnings for matt… and once his name faded from my everyday scribblings, it still seemed to work its way back to my pages now and again.

Here I am - eight years later… and his name still haunts me- who he was to me then still haunts me. I have searched high and low for matt- to ask him if I could include him here in my writings… and I have heard from others that he “fell off the deep end” or whatever saying would best represent him going a bit crazy- “stranger than he was, if that is possible,”…  I have heard.

But I refused to give up my search, and obviously I was able to locate him, to get his ok… or else I would not be sharing his name here.

I used to write fictitious fantasy stories about matt and i. I tried to blend the reality of our meeting and short-lived “relationship” with what I dreamed of- how I wanted it to be. When I am ready, I will share them. But in blending this dream and reality, I eventually woke myself up, so to speak. Despite his absence from my physical life, matt was indeed a big part of my awakening- at least the thought of him was.

I have tried to write my story time and again… always beginning it and never seeing it through… In May of 2004 I began a project, which I titled, My Story Begins- Fragments from the Thoughts of a Young Woman...

But that is for a different day here...

it took about 2 ½ - 3 months before I emerged from the world of ‘shadows and light.’ My vision came back, thankfully, but that was really only the beginning... the beginning of the climax unraveling, of course.

[willworkforspoons]

I got the results back from my MRI yesterday. It definitely wasn't the positive there's-nothing-wrong diagnosis that I was hoping for.

Back in June, I attempted to start working out for the simple reason of wanting to shed a few pounds over the summer months. It didn't work out so well, and I started having intermittent numbness and tingling in my legs. It was rather annoying the first two times, and when it came back for the third time, it started affecting my ability to walk.

During my fourth bout with the leg numbness, I lost the sight in my right eye. This was rather troubling, not only because I had a huge blurry spot in my vision, but because my right eye is my good eye with contacts and glasses. I was born with really thick retinas, and am legally blind without aids. I am also right eye dominant, so losing the right eye wasn't pleasant.

For about a week, there was no improvement, so I decided to go to the eye clinic. This was my first time seeking any medical attention for any of my symptoms. I felt that my eyes were pretty important since I want to go into a career field that pretty much relies on my sight. My eye doctor figured that since everything with my eyes was normal, this was optic neuritis, and recommended that I get an MRI.

The next day, I visited my regular doctor, and he also recommended an MRI. This was after he made me walk on my tip toes and had to catch me when I was about to faceplant. I got the MRI, and he called me in to hear his say on the results just yesterday.

He figures it looks like the start of Multiple Sclerosis. I'm not exactly shocked because I had somewhat been expecting this for a few weeks now. I'll be seeing a neurologist sometime in the near future so he can read my MRI and give his interpretation. I'm still hoping the white spots on my MRI are caused from my headaches throughout high school. It seems odd that I would develop MS at such a young age when I have no family history of it.

I currently have no balance. My right foot is always numb which makes me walk like a pirate with a peg-leg. I'm pleased to say that at the moment, the overall numbness in my legs has decreased so I can appear to be walking normally for college starting up again next week. I still can't see out of my right eye which continues to trouble me. My right hand is also so numb that it feels like its about to fall off. I was upset today to find that my "typewriter" handwriting now looks like that of a student in the 5th grade, and it is actually a chore to type all of this out.

All I can say is hopefully these symptoms wear down a bit more. Hopefully the Neuro. will say that I don't have MS, and I don't have a De-myelinating disease. Hopefully a spinal tap will remain unnecessary.

Until then, I push on.

PS. Who goes to an eye appointment expecting to get an injection? On that note, who goes to an appointment to receive a diagnosis, and gets their finger pricked? That totally blew.