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    Old 11-26-2003, 05:08 PM   #1
    foxtrot
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    Question Optic neurits

    Hi everyone,

    I have been experiencing terrible symptoms for the past 5.5 years and can't get a diagnosis. I have had 3 mri's 2 yrs apart and also an evoked response which were all normal. It all started with bright yellow lights and loss of central vision for approx. 5 min. One neuro said optic neuritis and every other dr. that I've seen says migraine not optic neurtis.

    The worst symptom is like a dropping sensation down my spine with movement and fatigue. I sleep between 9 and 10 hours a night and always wake feeling like I have had no sleep. I have 3 young children and I just can't function this way. Does this sound like an MS symptom?

    My question is:

    Could optic neurits cause loss of vision for only 5 min.? Everything that I have read and heard on it is that your vision gradually increases over weeks to months.

    Thanks for your help.
    Liz

     
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    Old 11-26-2003, 09:23 PM   #2
    californiasunflower
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    Re: Optic neurits

    Hi there!

    I don't know if I can answer your question about optic neuritis affecting vision for only five minutes but I wanted to ask you if you were examined by an opthalmologist (Eye MD)? Did the eye exam indicate swelling of your optic nerve? Have you had any other eye problem symptoms? Any floaters? New floaters if you had any before?

    Optic Neuritis is a symptom of MS and there is treatment for it that is suppose to help prevent the onset of MS, which is IV solumedrol followed by oral prednisone. (There is info on the net about it. See the ONTT after researching MS and/or optic neuritis)

    From what I understand, Optic Neuritis should resolve in 6 to 12 weeks after treatment.

    The eye is one source that the body uses to indicate that there is some systemic or autoimmune illness. Hope your get some answers.

     
    Old 11-27-2003, 05:15 AM   #3
    foxtrot
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    Re: Optic neurits

    Hi California Sunflower,

    Thank you for your reply.

    I have seen neuros, ents, an optomostrist, had mri's, vestibular testing, evoked response. I have only had one neuro say optic neuritis. I did see a neuro at the ms clinic and they basically just laughed at me. They told me that they can't diagnose ms without proof. They made me feel it was all in my head and like I wanted them to tell me I had ms.

    After loosing central vision for 5 min.(after the birth of my 2nd child) I haven't felt the same. I was extremely tired for the first year and then after the birth of my 3rd child all hell broke loose. The ground was dropping or shaking, any movement would make me dizzy and constantly lightheaded (fainted 3 times in 4 yrs). I would get up in the morning and feel hungover everyday. Unfortunaley at the time I had 3 kids 3yrs and under so the doctors didn't take me seriously. Must be stress or postpartum depression. I knew it was moore than that. I still have it and my youngest is 4yrs now. I actually went to my doc for a physical and told him how I felt again and he said maybe postpartum depression. My youngest is four for gods sake.

    P.s. I have had floaters in my eyes since I was a teenager. The eye doc said it was of no conern.

    Liz

     
    Old 11-27-2003, 12:57 PM   #4
    californiasunflower
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    Re: Optic neurits

    Hi!

    I have to tell you that I love children. Wish you were feeling better! This must be really extra hard on you. Your fainting symptom reminds me of anemia. Have you had that checked lately? I had it two times and I couldn't believe the adverse affects. Felt faint too! Anemia was hard to get rid of too! That may be one cause of your fatigue. It is serious so I recommend you check it out by getting a blood test. My OBGYN helped me and so did my GP. If you review the websites about anemia and its adverse affects you'll see that it can cause autoimmune too! Pernicious anemia is one.

    I really regret to hear that you were treated so badly by the MS clinic. If you get a chance, go to the Lupus board and read Angelic's story titled "Journey to a Diagnosis" It is worth the time. She too was mistreated and misdiagnosed until she found Dr. Graham Hughes who helped her tremendously!

    Don't accept the shame or implications that you are out of your mind. You're having problems because there is an underlying reason. You'll get lots of support here and tips on how to handle getting the care you need and deserve. There are caring, kind, sensitive and very, very adept physicians who will understand what you've been through and willing to help. Some understand that patients have been accused of their symptoms being "psych" causes when in fact the cognitive functions have been affected due to the illness. I hope it doesn't take extra expense and time for you to find one/them.

    I haven't been diagnosed yet either, but Angelic's story has tugged at my heart, inspired me, and helped me realize that not only do patients have to deal with the confusion of an unknown disorder but they are subject to those who may feel threatened by the difficulty of naming what is happening to the patient. Since they can't, some respond with absolute arrogance and other undesirable behaviors. Like I mentioned above, some Physicians are truly sensitive and caring to their patients and appropriately refer them out to a specialists that they hope will diagnose and treat their patient. I've had some let downs too with the referrals, and my neuro and Eye MD are just as concerned about that as I am. With Angelic they missed all the clues until she saw Dr. Hughes. But in my case, I feel that my body just isn't giving my physcians the clues yet as the lab/imaging tests were unremarkable etc. Through this process, I've been paying attention to my symptoms so I can relate them. With cognitive difficulties sometimes, it is hard to articulate and/or remember. I try to get prepared before the visit but sometimes I still fail and realize it in the car leaving the doctor's office or days later.

    You said a neuro indicated you had MS. Have you seen this neuro again? Is this physician aware of your current symptoms? She/he may be your ally. Has she/he been able to get you tested and to a referral? I'm going to share my story so you understand why I think this neuro is who you may need to call again, if that is possible. Don't give up. My neuro has been a godsend for me.

    I'm lucky to have a neuro who is sensitive to me. she is an MS expert, nationally known. She told me I had optic neuritis and treated me for such. She also informed me that I had a health problem that would present itself within a year, most probable MS. (I've been dealing with symptoms for couple years that I think an incident triggered. Even though I don't have the diagnosis yet, just knowing she suspects an illness made sense to me as to why I was going downhill). She named a few other horrific autoimmune diseases that may present instead. (The comic in me recalled the "Lets Make a Deal" GameShow and I asked myself: Door #1, Door #2 or Door #3. Behind each door is MS, Lupus or Sarcoid. Hey! ) Okay, I'm being silly

    When optic neuritis presents itself it usually is an indicator of MS. She prescribed the IV Solumedrol/prednisone tablets for me, which I am grateful for her treatment because I feel I've been given a chance not to get MS. My eye condition is baffling and my physicians are very concerned about finding the cause so that I don't lose my vision permanently. When someone presents themselves to the doctors with these things and they've done all the tests and nothing can be found, they will do referrals to specialists. I saw a neuro-opthalmologist who determined no optic neuritis but I had a central retinal vein occlusion (CRVO). He said due to my MRI results and the lab testing results, no threat of MS. He is the master. I know my neuro is concerned about the inflammation inside my eye as my sed rate lab was high. Went to an inflammation doctor and he thinks it may be a thyroid autoimmune. On thyroid med now. When I asked this physician if the thyroid problem could be the reason for cognitive difficulties he offered to send me to a neuro-psychiatrist. He said, when he refers his thyroid pts. to a particular one his pts. are sent back stating hypothyroidism is the cause. So why go? I believe that whatever cognitive difficulties I'm having is due to whatever other symptoms I'm experiencing. I believe it is just one of the symptoms. Afterwards, I returned to my neuro who appropriately ordered more tests for APS, etc. Those were negative. At this time, I am just waiting for my eye to recuperate and hoping that I don't lose my vision in the interim. We can't find the cause although we've given a diligent search.

    I've run into being told that there is no treatment and no cure. there isn't for my eye but to find the inflammation cause and treat that aggressively. But we can't find it. Just have to wait for the vein to open up. My Eye MD's contention is that it is not just CRVO, and I was recently referred to a retinal specialist. I liked him and would return, but I left with a sinking feeling that took me a few days to get over. Frantic that I'm taking a risk with my eye. I'm finally calm again, and have my perspective in order, and my next step planned.


    I understand feeling fatigued after childbirth--and needing energy so you can enjoy your children! You are experiencing more than just post-partum stuff. When I had my firstborn, I ended up having a cesarian section and dealing with a staph infection that fatigued me for two years. I recall when getting home from the hospital not being able to lift my head off the pillow, wondering how in the world can mothers take care of their baby when childbirth causes such fatigue! Not having any other experience to compare it to then, I just figured I had to "roll with the punches" and this was typical. But it wasn't! My second childbirth proved that. I did get over it eventually and before I had my second baby. The staph infection is what sapped my energy level for two years as my second childbirth, although cesarian too, was a much, much better experience. Even with a respiratory illness, I did really well, having energy to cope with my children etc. But the respiratory illness (pneumonia and bronchitis) took me years thereafter to get strong enough so I didn't catch every cold, virus, etc. that was circulating.

    I made life changes which included different eating habits-- adding garlic and onions to my diet to boost my immune system, exercise, and "fun" to my life, which kept me healthy.

    I had an incident occur a few years ago which I believe has triggered all these symptoms to occur. I've learned from Angelic to think about my history of fevers, illnesses, etc, and present them to the physicians as well. When you have a moment--and I know that is rare with little ones around you can jot those down, and keep a record of your symptoms so you can relate them to the doc. My neuro asked me my family history, my medical history, what I had been exposed too --poison, tuberculosis, HIV, Hepatitis, etc.

    Check out Immune and Thyroid boards too! Eye problems can be the symptom of lupus, sarcoid, MS and thryoid problems. You'll get a well-rounded info about all possibilities! Archives are great too. I've just started to review them but limited to how long I can stay on due to my Eye and other symptoms to avoid a flare up.

    Keep posting so you can get info. Hope to hear from you.

    Last edited by californiasunflower; 11-27-2003 at 01:06 PM.

     
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