In other news, I have an eye patch.

I haven’t written in a while. Truth be told, recording my lack of progress is slightly depressing. I wanted to write so many times, but I just couldn’t get around to it. Rewriting dialogue over and over in my head isn’t exactly the same.  I have been trying to get through this semester, but in the process, I rarely was able to stomach my doxy. Between balancing it with other medications and the nausea it gives me on its own, I was struggling. Throwing up again, tired, crazy. My doctor chastised me at my last appointment for not telling him I was having issues. And in the meanwhile, while some things, like the peripheral neuropathy seem to have gone away, other symptoms have been worsening.

I’m now on Azithromicin, and so far I’m alright. But the medications I’m on- so many, or so much is just constantly in me. Indomethacin, Ponstan, Mirena, Advair, Spiriva, Iron, Vitamins. The main few that I should be taking often. There are the alternates, of course, which I won’t get into right now. I’m nauseated right now and I’m not absolutely sure why because I haven’t even taken anything yet. I took Tridural last night,, which didn’t even seem to help, so I can’t imagine that it is from that, or my Advair. I really don’t know.

I’m still twitching, my muscles, that is, my lungs still ache, I still have arthritis. I still have bad headaches,  my brain is still foggy-but what has been bothering me the most lately have been my eyes- along side the headaches. The same eye that has ptosis (that is constantly moving, different “drooping lengths”) has had floaters in the eye, trouble seeing up close, eye pain, blurred vision (etc) for over a year now.  But it has been getting worse, so much worse. There were times when the eye pain would keep me awake at night and always have I been affected by too much light or too little light- but it has never been this bad. More and more I have trouble seeing for longer periods, sometimes in both eyes but usually in the left eye, the same eye with the ptosis. I woke up this morning and once again, I was so, so incredibly scared. I couldn’t see. I mean, yes, I could see, but the vision was a combination of double vision and blurry for quite some time. It has been like that after straining- reading or anything of the sort, but it has been getting worse.

My doctor called for an (another one, more specific) MRI on March 25th. It takes a few days for them to process it and a week or so for the radiologist’s report. By April 5th they had already called me to book an MRI. Last time, before I had a diagnosis, when it was from a (hate to say it, but good for nothing-) neurologist who thought I had fibromyalgia,  it took me months to get an MRI and a lot of harassing to get it earlier. This time, I suppose with my LLMD giving an accurate portrayal of what’s wrong and asking for a specific site…they called me right away, as they had a cancellation and the radiologist had marked my case urgent. I was in Winnipeg, though, and couldn’t get it done obviously here in Toronto. So now I’m booked for their next (earliest) available time, which is May 8…at 4:30 in the morning. But I was told to keep calling back until then to see if there are cancellations. Fingers crossed.

But this made me even more scared.

Optic neuritis is the inflammation of the optic nerve that may cause a complete or partial loss of vision. [wiki:]

Optic neuritis is inflammation of the optic nerve, the structure that connects the eye to the brain. The optic nerve consists of nerve tracts (axons) that originate in the retina of each eye. The optic nerve carries visual information from the retina to the nerve cells in the brain stem, where the information is relayed to the area of the brain that recognizes vision (the occipital cortex).

Optic neuritis can occur in children or adults and may involve either one or both optic nerves. Optic neuritis typically affects young adults ranging from 18-45 years of age, with a mean age of 30-35 years. There is a strong female predominance. The annual incidence is approximately 5/100,000, with a total prevalence estimated to be 115/100,000.

The most common etiology is multiple sclerosis. Up to 50% of patients with MS will develop an episode of optic neuritis, and 20-30% of the time optic neuritis is the presenting sign of MS. The presence of demyelinating white matter lesions on brain MRI at the time of presentation of optic neuritis is the strongest predictor for developing clinically definite MS. Almost half of the patients with optic neuritis have white matter lesions consistent with multiple sclerosis. At five years follow-up, the overall risk of developing MS is 30%, with or without MRI lesions. Patients with a normal MRI still develop MS (16%), but at a lower rate compared to those patients with three or more MRI lesions (51%). From the other perspective, however, almost half (44%) of patients with any demyelinating lesions on MRI at presentation will not have developed MS ten years later. Some other causes of optic neuritis include infection (e.g. SyphilisLyme diseaseherpes zoster), autoimmune disorders (e.g. lupus), drug induced (e.g. chloramphenicolEthambutol), and vasculitis.

Optic neuritis causes vision loss, which may be mild or severe and may occur in one or both eyes. Loss of vision may occur over days. Vision in the involved eye or eyes can range from almost normal to complete blindness. Color vision may be particularly affected, but the person may not realize this. There may be pain with eye movement. Depending on the cause, vision usually recovers within a few months. However, some people have repeat episodes of optic neuritis.

My eye hurts so effing much, and I have an exam tomorrow and I’m exhausted and nauseated and my bones hurt. And I can’t see that well. I’m going to put this damn eye patch on which I don’t know if I should be wearing, but oh well, and I really don’t feel in the mood to be a pirate but I have no choice, I suppose. Keeping the eye open and using it hurts more than anything. God, I think I’m going to throw up now.

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1 Comment

Filed under tale of woe

One response to “In other news, I have an eye patch.

  1. Hiya – saw your comment on my post, so thought I’d check your blog out.

    In a demyelinating disease such as MS, optic neuritis is very often a temporary thing. I had it for a few months but it is completely back to normal, now. Some people have residual effects, but it is important to say that it rarely leads to complete blindness and if it did, the chances are that it would get better again.

    In answer to your question, my early symptoms were optic neuritis, vertigo (dizziness and nausea) and fatigue. Since then I have had a number of relapses, the last one left me with permanent doublevision when I look left and nystagmus when I look right and sporadic bouts of nerve pain in my feet and legs. I no longer have o.n. or vertigo.

    It will be well worth talking to your examiner and putting your exam off(?) until a later date, or taking a note from your GP so they can take your symptoms and anxiety about them into account.

    Hope this helps, get in touch if you want to talk further.

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