On February 7, 2009, I started this blog with a post about abnormal redness and other symptoms in my left eye.
I woke up on Monday, December 12 with a dark red right eye. The redness comes with stabbing pain, blurry vision, tearing, and puffiness. See photo, right. For lack of knowing what else to do, I used 3 Tobradexdrops. That’s the pharmaceutical I have on hand
My right eye, Dec. 12, 2011
for when my left eye does this. My Dr. PCP would likely like to know about this but I have done what I was supposed to do. She recommended 5 months ago that with my newly acquired good insurance that I go to a Neuro-Ophthalmologist.
I have yet to make an appointment.
I believe I have a long list of reasonable excuses for not making the appointment. The overarching reason (beside working a ton of hours at my new job) is my reluctance to start it up again.
What is It? It is the commitment to new doctor-patient relationships. These relationships include follow up including more of it.
The multiple doctors. The tests. The referral notes. The blood draws. The waiting. The retelling of my history.
I’m over it.
Even so, I called the Neuro-Ophthalmologist on Friday and found out I need a report from a regular Ophthalmologist stating why it is important that I see the super special Neuro-Ophthalmologist. I don’t really have access to that. I stopped seeing my Ophthalmologist when she stopped providing me with helpful information and suggested there may be nothing wrong.
I find it difficult to believe that anyone could look at my eye in this condition and not at least diagnose me as having something wrong. Perhaps I should see if I can get an appointment at super eye clinic with a regular Ophthalmologist who will then connect me with a Neuro – O?
While I am admitting my lack of follow-through, I will admit: It has been 1.5 years since I have seen an endocrinologist and I have not had any follow-up on my multinodular goiter. This is partly by choice of not wanting to deal with it and also because of a busy schedule.
I also need an Otolarngologist – to get my ears and larynx checked and get new hearing aids. I’m having such a hard time hearing and my ears are full of dry skin and yucky stuff.
The Pain Management Doctor I am seeing has got me to a place where oral pain medication is limited, a patch is my main treatment and I remain at 2.5mg of Prednisone. Pain Doc believes I need an MRI of the Lumbar spine. My last L-spine was in January 2009. My Hopkins Doc stated in my report last year that since the spinal cord does not go all the way through the L Spine, I did not need it examined.
It would be great to have someone who could help me navigate this process. Someone to give me good, solid advice about whether there is more I need to explore about my body and its problems. Examples: what is the cause of my limited ability to walk – can we find out yet? Do I have psoriasis like my father and therefore arthritis? What can I do to have less fatigue? What is up with my eyes? What is my prognosis? I know that the concept of a Medical Home includes a Navigator-type position. (Read about the Patient Centered medical Home by clicking the link) More on this in another post…
Surprise! Nomination
I received an email message this week from Wego Health to notify me that this Blog was nomininated for one of their Health Activist
Awards 2011- The Best Kept Secret Award: “Help us find the hidden gem of the Health Activist world. I’m pretty certain I know what reader nominated me – I’m honored. Thank you for thinking of me. There are many different awards and I encourage you to check them out. I’m pleased that their process is not a popularity contest – there is a judging panel. I’d feel this way if I was in the running or not. 
Thank you for reading. I hope you are hanging in there with all you are going through.
Best,
Q
Neuro-Ophthalmologist
Filed under: Uncategorized Tagged: | abnormal redness, doctor patient relationship, endocrinologist, eye clinic, eye redness, neuro ophthalmologist, pain management, Wego health
I can’t remember your whole medical history, sorry – but the eye problems struck a bell. Has anyone eveer considered Ankylosing Spondylitis for your diagnosis?
Good question – not that I know of. Thanks for thinking of this.
You probably alrady found the information, but here is a good link to seee if this sounds like it fits your symptoms: http://www.spondylitis.org/about/as.aspx
From reading there and elsewhere, fatigue and mild anemia (anemia of chronic disease) can also occur. Inflammation of the sacroiliac joint, and eye symptoms. Can be in other joints, even shoulders, hips, knees… It often takes a long time to diagnosis, as it does not immediately show up on xrays.
many thanks TAM! I will mention it to my docs. I’m grateful to you for sharing this information. Wishing you the best -Q
You are welcome. Best of luck, I hope things get bettere for you.
TAM
Wow Q, I had the same eye symptom in my left eye back in 2009 also…docs never determined the cause…along with the many other symptoms I have had since then…now being worked up for sjogren’s! Have dry eyes confirmed by opthamologist & dry mouth & appt today for biopsy of salivary gland and when I googled the procedure your site came up…boy I am glad I found this because I don’t think the dermatologist I am going to is qualified to do that procedure so I prob won’t let him…he can just do the biopsy of a lesion on my scalp and I will try to find someone who knows Sjogren’s for the lip biopsy…looks like you had a bit of recovery from yours and of course my neurologist who has been working me up said nothing about any big procedure or stitches etc so I thought they just took a tiny piece of surfact skin..THANK YOU SO MUCH FOR POSTING YOUR STORY! I have the extreme fatigue too, neurologic symptoms, difficulty walking, severe pain in hips and right leg and foot went numb for 5 days straight now have permanent pain in right leg & hip & foot, was misdiagnosed as cervical myelopathy due to my severe cervical degenerative disc disease which delayed diagnosis of autoimmune dz despite my telling dr’s over and over that I think I have autoimmune problem…then in Jan 2011 I got real sick with tonsillitis, burning mouth syndrome, geographic tongue, burning of my torso & thighs, etc. etc. and have been mostly in bed ever since…have a cousin who has MS so had a spinal tap but mine was negative for MS…so I did more research & I definitey fit the picture of Sjogren’s from childhood symptoms on till now so I think we are on the right path but need to find a good dr…been to several bad rheumatologists who treated me terrible…hope your mouth is better and look forward to coming back to your site soon….gotta go see the dermatologist..maybe biopsy of my scalp lesion will shed some light & help diagnose…take care, Christina
Hi Christina, I’m glad to read that you are getting some more testing done that may be of help. A skin biopsy is one thing I still haven’t had. I’m glad you found helpful information here and most of all, hope you are headed to a place with answers. keep in touch and you also take good care.
Best
-Q