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Old 04-18-2011, 10:06 AM   #1
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bellabri287 HB User
Diagnosed: Orbital Myositis

UPDATED: Official diagnosis of orbital myositis.

I am so happy I could cry, I am new. Hi. I am amazed to find a message board that actually might have information about my diagnosis. I have just been diagnosed with Orbital Myositis. I am scared to death, my blood tests will not be back until Thursday regarding autoimmune dieases this could be associated with. My biggest fear is my ability to have children with this disease. I am 24, getting married this year, I want babies and was planning on waiting 2 years, but from what I hear steroids can ruin that chance and they are the main treatment for this disease. So if I have to have a child before starting treatment, I will.

I have a mild case right now, MRI shows inner eye muscles swollen, I have pain and headaches controlled with Ibuprofen 800 MG 3-4x a day, right eye the top muscle is swollen so I have limited motility of that eye. I have double vision and general wonkyness when I look down in that eye, all other vision is normal and the lid is only slightly puffy. This is my second flare up, the first went away in 1 week and resolved itself, this is going on 3 weeks.

Is there anyone out there who has Orbital Myositis and was NOT treated with steroids?

If you were treated with high dose short term steroids, do you have any side effects?

Thank you to anyone who response, if you have either of these I am sorry and feel for you.

Last edited by bellabri287; 04-20-2011 at 08:32 AM.

 
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Old 06-10-2011, 06:38 AM   #2
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BostonFishGuy HB User
Re: Diagnosed: Orbital Myositis

Just diagnosed with Thyroid Eye Disease Came up out of nowhere...wound up in the hospital. Diagnosis was a complete surprise. I am at that point where I am just a week into this; am starting to get over my denial that I have an illness and a long road ahead. I am terrified of the possibilities and implications...This SUCKS. How are you making out?

 
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Old 06-10-2011, 07:30 AM   #3
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bellabri287 HB User
Re: Orbital Myositis or Thyroid Eye Disease

I am sorry to hear you have that condition. Anything to do with the eyes can be rather scary, to me at least. After being officially diagnosed with the Orbital Myositis (has similar symptoms) I went through the fear and denial, then acceptance. I have a 'condition' that is random, comes and goes whenever and that's just how it is. I found my biggest trigger, rubbing my eyes, and I don't do that at all any more. Do you know what triggered yours to flare, an allergic reaction? That was mine.

Since my PCP had no clue what OM was or how to treat it I have seen specialists. A Neurological Ophthalmologist at UCSF who confirmed everything and said I had OM, it wasn't severe, if it flares again call him and we can deal with it. It was so comforting to see someone who knows what this is and is confident in how they can treat it. I would suggest you find that, a doctor or specialist who knows Thyroid Eye Disease and can treat it. It could be a regular Ophthalmologist working with your PCP to get your thyroid back to normal, or it could be like mine a Neurological Ophthalmologist.

Once you are in the care of people who know what this is you have and know how to treat it it feels so comforting and its easier to be at peace and live with what you have. Best of luck to you and I hope they can get your symptoms under control and get you comfortable. I know I was uncomfortable for a long time before my flare subsided.

If you need to talk, just post or PM me. We may not have the same disease exactly but the symptoms are similar and I know how it feels to have your eyes messed up.

 
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Old 06-23-2011, 06:54 AM   #4
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ebonymoon HB User
Re: Diagnosed: Orbital Myositis

So sorry to hear you have Orbital Myositis also known as Psudo Tumor I have battled this debilitating desease for over 20 years and try to avoid Prednisone (steroid) as much as possible because of the dreadfull side affects but some of the lucky ones do and have either kept the condition at bay or are "cured" with just one dose. I would be extremly cautious about taking steroids if trying to fall pregnant and more so if you already are. The very best of luck to you and hope your symptoms remain bearable.

 
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Old 10-01-2011, 10:20 AM   #5
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Rfweiss HB User
Re: Diagnosed: Orbital Myositis

Has your Myositis cleared up? I was diagnosed 6/26/2011, went on Prednisone got al the way down t 5mg, and had another flare up. Unfortunately not having the success I had initially.

 
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Old 10-04-2011, 10:31 PM   #6
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ebonymoon HB User
Re: Orbital Myositis or Thyroid Eye Disease

Still suffering. . . . From what I have read it appears if condition is not diognized early or properly treated first time it tends to become more insidious and you can suffer repeatrepeated episodes Then have to rely on more and more and less successful doses of prednisolone SORRY !!!!

 
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Old 11-24-2011, 01:05 PM   #7
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Join Date: Nov 2011
Location: Hanson, MA USA
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Bettybear HB User
Smile Re: Diagnosed: Orbital Myositis

Quote:
Originally Posted by bellabri287 View Post
UPDATED: Official diagnosis of orbital myositis.

I am so happy I could cry, I am new. Hi. I am amazed to find a message board that actually might have information about my diagnosis. I have just been diagnosed with Orbital Myositis. I am scared to death, my blood tests will not be back until Thursday regarding autoimmune dieases this could be associated with. My biggest fear is my ability to have children with this disease. I am 24, getting married this year, I want babies and was planning on waiting 2 years, but from what I hear steroids can ruin that chance and they are the main treatment for this disease. So if I have to have a child before starting treatment, I will.

I have a mild case right now, MRI shows inner eye muscles swollen, I have pain and headaches controlled with Ibuprofen 800 MG 3-4x a day, right eye the top muscle is swollen so I have limited motility of that eye. I have double vision and general wonkyness when I look down in that eye, all other vision is normal and the lid is only slightly puffy. This is my second flare up, the first went away in 1 week and resolved itself, this is going on 3 weeks.

Is there anyone out there who has Orbital Myositis and was NOT treated with steroids?

If you were treated with high dose short term steroids, do you have any side effects?

Thank you to anyone who response, if you have either of these I am sorry and feel for you.

 
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Old 11-24-2011, 01:19 PM   #8
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Bettybear HB User
Smile Re: Diagnosed: Orbital Myositis

I too was diagnosed with Orbital Myositis in the early 1990's. I was put on high doses of steriods for many years. I saw many eye specialists both near my home and in Boston. Finally, one day a doctor I was seeing told me to see a neuro-opthamalogist in Boston. He told me the first thing to do was to get off the steroids which I did very quickly. He then did a surgery on my eye to lengthen the muscle so that even though the muscle was affected, it wouldn't be painful. It was a major relief to have this surgery and not have the horrible pain or steriods any longer. I can still see out of that eye, but it isn't perfect due to the damage of all the years of inflammation and scaring. There is always hope...just try to find a neuro-opthamalogist in your area that is knowledgeable about orbital myositis. Hopefully, you will find a help for your condition the way I did. It has been about 12 years since my surgery and I only take steroids for Optic Neuritis that I get every three or four years from Multiple Sclerosis. I only have to take them for about a week or two and then am off totally again.

My best to you

 
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Old 11-27-2011, 11:39 AM   #9
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Rfweiss HB User
Re: Diagnosed: Orbital Myositis

Thank you so much for the info! I will check into a Neurological-Opthamologist. I am working getting off Prednisone, I have all the side effects and think the Prednisone is the worst of the problem, worried about dropping the dosage because the last time I had a flare up. Again thanks for the information!

 
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Old 11-27-2011, 02:34 PM   #10
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Bettybear HB User
Re: Diagnosed: Orbital Myositis

I am so glad you read my message...I too had so many side effects from Prednisone. I remember going to an eye specialist who told me I would be on at least 40mg of Prednisone for the rest of my life. I had to wear sunglasses all the way home because of having the eye examination. They hid my tears from my husband who was driving. I just couldn't imagine having to take Prednisone for the rest of my life.

The surgery was in 1999, well over 10 years ago. I have never had an episode of Orbital Myositis since that time, at least nothing I felt. I do have Multiple Sclerosis, so every few years I have optic-neuritis which is very common with people with MS. If it is bad, I take Prednisone under the direction of Dr. Bienfang and am off it in a week or two. Other than that, I am doing just fine, even with MS. I can't see to drive because of the MS, but other than that, I keep busy with doing things for my husband and family. Our children are grown, so I love planning get-togethers, I work in my flower gardens during the summer months, decorate and enjoy all the winter months of holidays and birthday parties. My life is full and happy. I never thought I would be so happy and healthy at this age, but Dr. . He is one of my top heroes...my husband is my first He has been at my side through all my health issues, supporting and helping me. We love each other more each day We have been married 44 years. I hope you find a neuro-opthamologist who will be able to help you

Take care.

Bettybear

 
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Old 11-28-2011, 03:01 AM   #11
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sherida54 HB User
Unhappy Re: Orbital Myositis or Thyroid Eye Disease

Hi there. I just joined this site and am wondering how many people here have Inclusion Body Myositis. So, i want to let you know about one of best product about myositis message like that Slendertone. Slendertone help you to make more powerful myositis message.

 
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Old 04-16-2012, 03:44 PM   #12
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monkey mom HB User
Cool Re: Diagnosed: Orbital Myositis

Quote:
Originally Posted by bellabri287 View Post
UPDATED: Official diagnosis of orbital myositis.

I am so happy I could cry, I am new. Hi. I am amazed to find a message board that actually might have information about my diagnosis. I have just been diagnosed with Orbital Myositis. I am scared to death, my blood tests will not be back until Thursday regarding autoimmune dieases this could be associated with. My biggest fear is my ability to have children with this disease. I am 24, getting married this year, I want babies and was planning on waiting 2 years, but from what I hear steroids can ruin that chance and they are the main treatment for this disease. So if I have to have a child before starting treatment, I will.

I have a mild case right now, MRI shows inner eye muscles swollen, I have pain and headaches controlled with Ibuprofen 800 MG 3-4x a day, right eye the top muscle is swollen so I have limited motility of that eye. I have double vision and general wonkyness when I look down in that eye, all other vision is normal and the lid is only slightly puffy. This is my second flare up, the first went away in 1 week and resolved itself, this is going on 3 weeks.

Is there anyone out there who has Orbital Myositis and was NOT treated with steroids?

If you were treated with high dose short term steroids, do you have any side effects?

Thank you to anyone who response, if you have either of these I am sorry and feel for you.
My daughter was diagnosed in 2009 (age 11) and has at least one major flare up a year. Up until this year she was treated with steroids. Gained a tremendous amount of weight and all the sef-esteem issues associated with it. It has taken us 4 years to find a regiment of steroidal drops which keep the eyes open and IBuprofen 600 for the pain. Can't seem to find an expert.

 
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Old 04-16-2012, 03:48 PM   #13
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monkey mom HB User
Re: Orbital Myositis or Thyroid Eye Disease

My daughter was diagnosed in 2009 (age 11) and has at least one major flare up a year. Up until this year she was treated with steroids. Gained a tremendous amount of weight and all the sef-esteem issues associated with it. It has taken us 4 years to find a regiment of steroidal drops which keep the eyes open and IBuprofen 600 for the pain. Can't seem to find an expert. She sees double, has had a headache for over a year. Her eyes close if left untreated and is in a lot of pain. Right now her left eye is affected. Sometimes it is the right eye.

 
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Old 04-23-2012, 03:53 AM   #14
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monkey mom HB User
Re: Orbital Myositis or Thyroid Eye Disease

This is monkey mom's daughter, the one with om. I've had this awful disease for about four years now, for the first two of them, I was on steroids. Not only did these horrible drugs not help my pain, but the side-effects were terrible. This year though, my neuro-ophthalmologist prescribed to me a newly released eye drop called Durezol. It's amazing, it's one of the only thing that helps me, besides 600 mg of Ibuprofen. Since the change from steroids to eye drops, I've lost about fifty pounds. It really feels great not to have a life controlled by such an evil drug.

 
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