I am getting a DX for my eye tomorrow

[xobehs]

I met with another dr this evening.
It sounds like I have optic neuritis.
I will see a neuro tomorrow (hopefully, my doc is going to try to demand I get in) and have them look at my MRI to determine the course.
We have no health insurance and it can be serious long term health issue.

I am shitting a brick. DH is away and I have to do all of this by myself tomorrow. The pain is GD bad I want to smack my face on the table.
SOB.

[jessiehannan]

:hug:

[JudyJudyJudy]

Bless your heart. That sounds awful. I don't know anything about this. What can be done about it?

[xobehs]

stlukeye.com
Optic Neuritis

Overview

Optic neuritis refers to swelling or inflammation of the optic nerve. It is often associated with diseases causing demyelination (a loss of the protective myelin layer of the the nerve) of the optic nerve, but sometimes the cause is unknown. Multiple sclerosis (MS) is the disease most often associated with optic neuritis. It is not uncommon to have an episode of optic neuritis prior to being diagnosed with MS. In fact, optic neuritis is often the initial sign of MS.

Most patients with optic neuritis experience a sudden onset of decreased vision along with pain and soreness when moving the eye. Optic neuritis usually affects only one eye and may be a recurring problem with certain diseases such as MS.

Signs and Symptoms

The following symptoms of optic neuritis may not occur in all cases; however, they are the most common problems associated with the condition.

*

Pain with eye movement (more than 90% of patients)
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Tender, sore eye
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Mild to severe decrease in central vision
*

Dull, dim vision
*

Reduced color perception
*

Decreased peripheral vision
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Central blind spot
*

Fever
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Headache
*

Nausea
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Decreased vision following exercise, hot bath or shower (activities that elevate body temperature)


Detection and Diagnosis

The doctor takes several factors into consideration when diagnosing optic neuritis. The problem may not always be readily apparent by examining the optic nerve, so special attention is paid to the patient's symptoms and other tests. Pain with eye movement is a hallmark symptom of optic neuritis. The doctor may evaluate the pupils' reaction to light and order tests such as: visual field, color vision, and imaging of the brain (MRI).

Treatment

Since the Optic Neuritis Treatment Trial (ONTT), doctors have discovered that treating patients with intravenous steroid medication (but not oral steroids) reduces the risk of developing MS later on. This finding is very significant since approximately 50% of those who experience an initial occurrence of optic neuritis will develop MS. While this treatment has little if any impact on vision, it is important for overall health.

Optic neuritis characteristically improves over a period of days to weeks. For some, a complete recovery may take months

[JudyJudyJudy]

Thanks for the info. That's scary. I hope the doctor will take it seriously.

[Sputterduck]

OMG xobehs. I really hope it's not that.

[jessiehannan]

That is so scary. :( I really hope it isn't that too.

[xobehs]

I just got back from the neuro:
I have Orbitial Myositis or Orbital Pseudotumor
Orbital Pseudotumor


Description
Inflammations can affect the tissues around the eye (orbit and adnexa). Certain orbital inflammations can look like tumors and are therefore called orbital pseudotumor. Orbital pseudotumor can affect one or both eyes of relatively young patients (less than 50 years old). They are not cancer.


Symptoms
Orbital pseudotumor can be quite painful. In fact, pain is one of the most common characteristics of this disease. In addition to pain, an inflammatory mass (tumor) can make the patient's eye protrude (proptosis) and restrict the movement of the eye. A biopsy (called an orbitotomy) is commonly performed to confirm the diagnosis of orbital pseudotumor and rule out other diseases that cause orbital inflammation.

Diagnosis
Orbital pseudotumor is typically characterized by the rapid development of pain, proptosis, and swelling around the eye and orbit. Ultrasound and computed tomographic (CT) scanning typically shows a diffuse infiltration of the orbit, an inflammation of the eye wall (sclera), and/or T-sign (with the optic nerve). Orbital pseudotumor related orbital masses typically have poorly defined margins. Systemic testing (blood and spinal fluid) may show signs of inflammation (e.g. increased sedimentation-rate) or atypical cells.

Patients with classic findings of orbital pseudotumor may be treated without a biopsy. These cases typically respond rapidly to steroid therapy (which helps confirm the diagnosis). Atypical cases of orbital pseudotumor usually undergo biopsy which helps establish the diagnosis.

It is important to test for infectious causes of orbital inflammation and certain systemic diseases. Typically eye cancer specialists will obtain blood, skin and radiographic (e.g. x-ray, MRI) tests for a variety of diseases such as sarcoidosis, tuberculosis, and Wegener's Granulomatosis (see table below). A biopsy specimen can be particularly helpful in diagnosing many of these disorders.

Treatments
Orbital pseudotumor will respond rapidly to high dose steroid therapy. Unfortunately, when the steroids are stopped, the inflammation can return. Eye cancer specialists usually reduce the steroid medication very slowly in order to prevent recurrence (return) of the disease.

In certain cases, chemotherapy (e.g. methotrexate, cyclosporine) and low-dose radiation (e.g. 1500-2500 cGy EBRT) may be needed to control the inflammation related to orbital pseudotumor. Most patients do well with steroid therapy but they are always at risk for recurrent orbital pseudotumor.

Additional Info
Other Common Causes of Orbital Swelling and Inflammation:

• Thyroid Eye Disease
• Sarcoidosis
• Infectious Orbital Cellulitis
• Orbital Myositis
• Scleritis
• Orbital Vasculitis
• Sjogren's Disease
• Wegener's Granulomatosis
• Malignant Ocular Tumors
I started steroids and will have the CT on Monday. My eye doc sent me right over to the neuro where I sat for 3 flipping hours waiting. No one seems to give 2 shits about the PAIN i am dealing with. Hope to GOD the steroids give me some relief.

ETA: Optic Neuritis was ruled out bc there is absolutely no disruption of my vision, and I am seeing colors just fine.

[jessiehannan]

I hope so too, and I am glad it isn't MS related.

[Sputterduck]

That sucks xobehs. It better than the neuritis which could be a sign of MS though!

I'm sorry you'll have to do high dose steroids. Those Really suck. I know someone who was on them for a few weeks and he gained tons of weight and broke out all over in bad acne during that time. Hopefully your dose won't be as high as his.

Are they giving you *anything* for the pain? Have you asked for something? You really need something I'd think.

[xobehs]

I've asked Sputter and I was turned down both times... told to wait until the figure out what is going on (which I do understand) but I feel like I am undergoing torture. I was told the steroids will go to work and I do not need pain meds. I am counting the minutes. I TRIED so goshdarned hard to make them understand I am losing my mind and that I NEED help with the pain as I have a LOT i need to deal with right now. But it wasn't really taken into account and the docs just kept putting me off.
I want this to be over. I am so overwhelmed without DH and having to run the house and business

[Sputterduck]

Wow, they give pain meds for sooo many things, I can't imagine not giving them to you for this! I'm sorry! I'd say get another opinion, but you are in pain *now* and waiting for a new appointment won't help now.

[jessiehannan]

I've asked Sputter and I was turned down both times... told to wait until the figure out what is going on (which I do understand) but I feel like I am undergoing torture. I was told the steroids will go to work and I do not need pain meds. I am counting the minutes. I TRIED so goshdarned hard to make them understand I am losing my mind and that I NEED help with the pain as I have a LOT i need to deal with right now. But it wasn't really taken into account and the docs just kept putting me off.
I want this to be over. I am so overwhelmed without DH and having to run the house and business
:hug:

[xobehs]

The Imaging center just called, my CT is all scheduled for Monday- it is going to be $200.00
I am relieved, I thought it was going to be upwards of 1k!

[madelsmama]

<snip> I was told the steroids will go to work and I do not need pain meds.

This is correct! The steroids will help. Their methanism of action is to decrease inflammation, and they are powerful.

If you aren't already aware, familiarize yourself with their side effects. If you become jittery/increased appetite/have difficulty sleeping, you won't be alarmed.

I'm glad MS has been ruled out. Hopefully, this treatment will be effective and have a rapid onset!

[JudyJudyJudy]

Hang in there. :hug:

[cheryln]

The Imaging center just called, my CT is all scheduled for Monday- it is going to be $200.00
I am relieved, I thought it was going to be upwards of 1k!


What a relief!! I'm sorry you are going through this alone.
Take care, I'll be thinking about you.

[MiMi_of_4]

I'm sorry you are in so much pain ~ can you not take an OTC anti-inflammatory to tide you over until the steroids kick in?

[xobehs]

Mims, the OTC were not TOUCHING this darned thing. 800 mg ibus 4 times a day. Baileys and coffee worked better- decaf of course, LOL!

THe steroids are working. The swelling is down and I am not feeling the ice pick in my face feeling. I am able to be nice to my employees and guests.

I need some help managing weight on the steroids though, HOH boy.

[xobehs]

the steroids are working! I feel and look SO much better, thank goodness.

I am going to HAVE to get my rear to the gym everyday and excersize, 30 mg a day is going to pork me up fast! I just weighed myself and I am 15 less than I thought, but SO not taking that for granted.

If anyone has any advice, warning or tips for living on steroids please advise me.

[Sputterduck]

I don't know that you can do anything about the weight gain. The person I mentioned with the steroid side effects was doing heavy martial arts throughout the week and he gained a Ton of weight. It did come off though.

[JudyJudyJudy]

I'm so glad the steroids are working!

They can be evil for weight gain, though.

[xobehs]

Not, good, at 5'5" and 160 I cannot afford it- and I already hit the gym 3 days a week. oh no :(
I was on the rhoids in high school and only gained 5 lbs which my doc was disapointed about, he wanted me to gain more as I was on a PT training regimen.