Loss of vision, blindness, optic neuritis, possible diagnosis?
I turned 50 in Sept '09. Went in for routine exams, I was healthy.
Then shortly after, October '09, I went blind in less than 24 hours - scarey. My vision returned after being put on high doses of prednisone. Since then, I have been seen my primary care physician, 2 optholmologists, and a neurologist. I have had multiple brain scans (MRI's, MRV's, ...), lots of blood work, and a spinal tap. No answers, although I was told my ANA was a little high and that meant my system was being hypersensitive.
I had gone off the prednisone the end of November '09. Then the last week of December I noticed my left eye was starting to get fuzzy ... then w/in 48 hours, I had very poor/little vision from my left eye - it was like looking through a very heavy fog, or thick frosted glass, or steamy glasses. It was different from the October vision loss which went black below a horizontal line, then basically dark all over.
Returned to optholmologist for further exam. Back to neurologist. Still no answers, other than optic neuritis ... which sounds like is a symptom of many things and often unknown causes. The discussion of MS keeps coming up, which I thought was supposed to have been ruled out by past blood work and MRI, but apparently they need a better MRI that includes part of the spine. Another possible (but I think very unlikely) diagnosis/theory is that I could have Neuromyelitis Optica.
I now keep a health journal, and went back writing down everything I could remember a month prior to the first vision loss. I'm copying it here in case anyone out there has any ideas of what could be causing my vision loss. I'm afraid of it continuing to reoccur, to cause permanent damage, and I hate the side-affects of prednisone (currently on 60mg/day)
9/23-25 had a weird flu
9/26 brought new group of foster kittens home from Animal Services
9/27 bitten by wild, feral kitten
9/28 azithromycin, 250 mg for infection from cat bite 2 tabs day, then 1 tab/day
Weekend of 10/3 ? felt weird pressure to eyes, very sensitive even to light touch of finger to eyelid, and pain when moved eyes around … lasted 2-3 days and went away
Experiencing some light headaches (since 10/17 or 18ish ?), so wasn’t sure if headaches causing blurred vision, or blurred vision causing headaches, noticed when driving and needing to check to my left for traffic when changing lanes was not easy
10/20, Tues, noticed could hardly see computer screen, very blurred
10/21, vision worse, made appt w/ primary care physician. 11:30 able to drive self to appt
10/21 1:30 appt w/ optholmologist, vision rapidly going – probably shouldn’t have driven from optholmologist back to primary dr because vision had declined so much, but that was the end of driving that day. Primary care dr's asst, drove me to MRI/MRA, at this point could no longer see to read paperwork, while waiting for ride home (around 5pm) cars were only big blurs when close up.
10/21 pm – began 80mg of prednisone, noticeable improvement in vision w/in 24 hours.
10/24 – felt safe driving self on quiet roads in Templeton, by evening could enjoy seeing/watching TV
10/25 – felt safe driving on hwy
Mon, 11/2: per Neurologist - start reducing prednisone today, from 80mg to 60 next 4 days,m-th 11/2-5
Then to 40mg for 4 days (Fri-Mon, 11/6-9)
Then 20mg for 4 days (Tues-Fri, 11/10-13)
Then 10mg for 4 days (Sat-Tues, 11/14-17)
Wed 11/4, exp weird feeling in chest after dinner around 7pm, cked bp 163/94 pulse 82 (prednisone affect ?)
Did 20 easy minutes on elliptical, helped eleviate feeling, re-ck bp @ 7:30p 160/95 p 101
Re-ck bp @ 7:50p 152/93 p 89
Did another easy 45 minutes on elliptical, rest, re-ck: BP 134/81 p 93
Took one ambien at bedtime, but woke at 1:30am w/ feeling in chest again
11/5: 1:30am bp 141/87
Easy movement on elliptical from 2:30-3am, makes it feel better
After rest 3:00am ish bp 138/93 pulse 78
9:30am after being up, breakfast, etc., bp 140/93
11/5: While bathing and getting dressed (around noon), noticed red bumps on arms, torso, and bikini area, some have white, firm puss (lovely) … my allergic reaction to penicillin was red, itchy bums years as a teenager
5:40 pm 151/89
8:30 pm 134/89 pulse 102
Note: Thurs, 11/5, spots broke out, plus noticed very slight sore throat … is this separate from vision loss, prednizone … is it something totally unrelated? Or somehow connected?
Appt w/ primary dr, Fri 11/6 9am, red spots & raised bp, generic ambien only helping sleep til abour 3am, so no longer taking
11/6 6:10am bp 140/91 p 76
Appt w/ primary dr, she ordered blood work to test for Valley Fever – results: negative
• Came home and read up on Valley Fever, realized I’ve had many/most of the symptoms, including:
• Fever (not sure)
• Cough (no)
• Chest pain — varying from a mild feeling of constriction to intense pressure resembling a heart attack (yes)
• Night sweats (yes, 3-4 nights, thought it was because of the prednisone)
• Headache (yes, but slight)
• Fatigue (not sure, because w/ the prednisone, I can't sleep and have a weird energy)
• Shortness of breath (maybe)
• Joint aches (no, but could the prednisone mask this?)
• Red, spotty rash (I have this mostly on chest, upper body, arm pits, back and bikini area ... the ones right below my bra area had the ***** pimple appearance ... broke out Thurs, 11/5, still have as of 11/9, but not the ***** ones)
11/16 lumbar puncture, French Hospital, Dr. Parmar – experienced back pain & headaches thru Sunday, 11/2
11/20 flu shot
MRV has been approved by ins (ordered by neurologist)
Vision Loss – reoccurrence (2nd time)
12/26 experienced slight cold symptoms
12/28 or 29 started noticing vision getting foggy in left eye
12/30 vision got bad enough knew I needed to see dr
12/30 reg optholmologist out of town, saw associate optholmologist, exam (incl tests, pics & dilating)
12/31 retud to optholmologist, re-exam and field of vision test
1/4 MRI & MRV
1/6 Optholmologist, exam and field of vision test
1/6 Neurologist – recommended going back on prednisone since don’t know what we’re dealing with.
60 mg 7 days, then 40 mg 7 days,
next appt w/ Fogel: 1/25, 3:15
Requesting authorization for another MRI to include spine
Blood work: Antibody Test for Neuromyelitis Optica (Devic’s Disease)
1/9 started Prednisone, 60 mg, noticed improvement w/in 24 hour time period,
continued improvement w/in 2nd 24 hr time period.
Tues, 1/12, prednisone Sat to today, noticeable improvement, good distance w/ just left eye, computer at arms length still needs to improve
Have been referred to UCLA. Possible diagnosis of neuromyelitis optica.
Other symptoms now also include a strange back pain that has become pretty constant and can best be described as the feeling of an icy hot patch. Numbness to hands/feet continues occasionally. And what I call "dumbness" has increased ... brain doesn't always seem to connect and work the way it used to, and it's different from the way most of us experience those times of forgetfulnes.
I had an optic Neuritis in Novemeber 2013. And it looks like we share a lot in common.
1) I took right befor eye drops containing zythromycine and right after....
2) I had a couple of épisodes of redness and pain in the eye
3) I had short of breath
I was treated differently (Injected with cortisone) but it looks very similar. In my case they think it is MS. I am looking for a wholistic practicionner but what is troubling is the fact that we share zythromicin and shortness of breath. How can we get in contact?
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