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    Old 04-28-2003, 10:40 PM   #1
    purple2067
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    Question Optic Neuritis

    Hi everybody!!

    I had to write this out before posting it because I have to remember everything I want to ask! So, sorry in advance for all the questions.

    Maybe some of you have been following my story (and what a story it is!). But anyway, I'll tell you a little bit about me. For the past 18 months I have had very bad dry eyes and eye inflammation. The only thing that has helped is the use of strong steroids. My doctor diligently checks my Intra-Ocular Pressure at least once a week while I am on them. On April 22, my pressure was 30 in each eye. Normal being 20, I had to come off of all steroids immediately. Due to the high pressure I developed bad headache-type pain behind my right eye as well as very blurry vision in that eye. My doctor said that although my optic nerve does not appear to be inflamed, I am feeling pain and I have poor vision, so it must be. He diagnosed me with Optic Neuritis today. He says that there must be some inflammation that he can't see. The pain intensifies when I look all the way to one direction or the other.

    Since April 22, my pressure has come down to 17 in both eyes now that I am off of the steroids. But the pain and poor vision remain. This is why he thinks I have Optic Neuritis. He says it takes about 2 weeks to go away on its own. The pain, as well as my vision are better when I first wake up in the morning. This coming wednesday I am going for a visual field test. He's already done several regular vision exams. I'm not quite sure what the test is called, but today he had me look at a series of larger circles that were filled with small circles of different shades of a certain color, and in the middle of these small circles is a large number, also made up of small circles of a color that is different from the one in the background. I hope I've explained this correctly! Anyway, if you have trouble seeing the number, that indicates a problem. I could hardly make out any numbers at all with my right eye.

    As you can tell, I am very concerned. My doctor is also very concerned. Other than being near-sighted, I have never had any sort of vision problems. I have some questions to ask all of you. I will also ask my doctor these same questions when I see him on wednesday. (I thought of them after I left his office today! Figures!) Any advice or answers will be greatly appreciated.

    Here's what I would like to know:

    1. What if anything, can I do for the pain besides taking tylenol and using cold compresses?
    2. Would taking an oral anti-inflammatory medicine such as Ibuprofen help with the inflammation of the Optic Nerve?
    3. Does this ALWAYS go away on its own?
    4. If my vision remains poor from this, can it be corrected with glasses or any other form of vision correction therapy? (As it is now, if I close my left eye, I can hardly make out the letters on the screen and I am about 1.5 feet away from it.)
    5. Am I going to aggravate the condition by constantly looking all the way in one direction or by constantly moving my eyeball (that can't exactly be avoided!). Sometimes I find myself doing that just to see if the pain is still going to be there. "Does it still hurt? Does it still hurt?" LOL

    and finally.....
    6. Since the Optic Nerve is inflamed, and ophthalmic steroids are used to bring down eye inflammation, can they help with this condition? Can steroids help an inflamed Optic Nerve? (I know I am playing with fire here, seeing as how it was steroids that got me into this mess in the first place!) What about a non-steroidal anti-inflammatory drop? I am already using Restasis which is for dry, inflamed eyes. But it takes a while to kick in.

    Whew, that's all the questions for now. Thanks a lot everyone,

    Elyse
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    Old 04-29-2003, 06:17 AM   #2
    DonnaDe
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    {{{Elyse}}}

    If I find some time today I'll do some research and see what I can find for you. Hang in there!

     
    Old 04-29-2003, 10:35 AM   #3
    qwerty75
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    Quote:
    Originally posted by purple2067:


    Here's what I would like to know:

    1. What if anything, can I do for the pain besides taking tylenol and using cold compresses?
    2. Would taking an oral anti-inflammatory medicine such as Ibuprofen help with the inflammation of the Optic Nerve?
    3. Does this ALWAYS go away on its own?
    4. If my vision remains poor from this, can it be corrected with glasses or any other form of vision correction therapy? (As it is now, if I close my left eye, I can hardly make out the letters on the screen and I am about 1.5 feet away from it.)
    5. Am I going to aggravate the condition by constantly looking all the way in one direction or by constantly moving my eyeball (that can't exactly be avoided!). Sometimes I find myself doing that just to see if the pain is still going to be there. "Does it still hurt? Does it still hurt?" LOL

    and finally.....
    6. Since the Optic Nerve is inflamed, and ophthalmic steroids are used to bring down eye inflammation, can they help with this condition? Can steroids help an inflamed Optic Nerve? (I know I am playing with fire here, seeing as how it was steroids that got me into this mess in the first place!) What about a non-steroidal anti-inflammatory drop? I am already using Restasis which is for dry, inflamed eyes. But it takes a while to kick in.
    1.) Over the counter pain relievers may help a bit, not enough to make you feel little or no pain with eye movement. Cold compresses won't help with the pain.

    2.) Not significantly, if at all. Wouldn't hurt to try though, just to see if you notice any relief.

    3.) It usually goes away on it's own, can't say 'always' though. Kinda depends on the cause.

    4.) Your vision will improve slowly as the inflammation subsides. There shouldn't be any permanent vision reduction/loss.

    5.) It shouldn't aggravate it too much. Moving your eyes a lot won't make it feel better though. It'd be best to try not to look around all over the place though.

    6.) No eyedrops are going to help treat optic neuritis...steroidal or non-steroidal.

    Sounds like your vision and color vision is reduced. Since your doctor couldn't observe any visible swelling of the nerve that enters your eye, then the inflammation is most likely behind the eye. This is called retrobulbar optic neuritis. This should show up on the visual field, however the reduced vision in the eye makes the visual field testing difficult. You may eventually need an MRI to find any inflammation of the nerve or areas of nerve demyelination.

    HTH


     
    Old 04-29-2003, 11:14 AM   #4
    DonnaDe
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    I didn't see a whole lot that specifically addressed your questions. Most sites talk about it in relation to MS, not as a result of steroid treatment. However, the good news is that it should go away on its own, without treatment.

    Symptoms
    Blurred vision in one or both eyes (especially after exercising or taking a hot bath)

    Dim vision (as if the lights were turned down)

    Abnormal color vision (dull and faded colors)

    Pain behind the eye, particularly when moving the eyes

    Fortunately, most people recover normal vision without any treatment of optic neuritis. For some people with significant vision loss, treatment with high doses of corticosteroids given intravenously may hasten visual recovery.
    ****************************************
    Optic neuritis characteristically improves over a period of days to weeks. For some, a complete recovery may take months.
    **************************************** **

    The vision loss associated with optic neuritis is usually temporary. Spontaneous remission occurs in two to eight weeks.
    **************************************** *

    Retrobulbar neuritis is a form of optic neuritis in which the optic nerve, which is at the back of the eye, becomes inflamed. The inflamed area is between the back of the eye and the brain. The optic nerve contains fibers that carry visual information from the nerve cells in the retina to the nerve cells in the brain. When these fibers become inflamed, visual signaling to the brain becomes disrupted, and vision is impaired.

    Retrobulbar neuritis can be caused by a variety of conditions, including:

    Infections such as meningitis, syphilis, Lyme disease and various viral illnesses
    Multiple sclerosis
    Tumors
    Exposure to certain chemicals or drugs
    Allergic reactions
    *********************************





     
    Old 04-29-2003, 11:39 AM   #5
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    Thanks guys! All that information really helped me understand this a lot better. But I am wondering how I got this, if I don't have any of the things that Donna mentioned (no MS or family history of it, no infections, no known tumors, no exposure to any chemicals or drugs that I know of, and no known allergic reaction). Is it possible that since my eye pressure increased, this caused the inflammation in the optic nerve?

    Yes Qwerty, you're right, my color vision and regular vision are both decreased. I notice that if I close my left eye, I cannot see colors as clearly and my vision seems much dimmer, and very cloudy. My vision does seem to be ever so slightly better today. The pain also seems to be the teeniest bit less intense. Either that or I am getting used to it! Plus, my poor tear quality doesn't help with the bad vision. I am seeing as though there is an opaque film over my eye. If my left eye is open then my vision is alright.... the left eye seems to be compensating nicely for the right one. I'm able to drive, I'm just afraid to drive long distances by myself. The eye feels like there is a lot of pressure on it, like I can't keep it open. Isn't it odd though that even though I had the exact same pressure in my left eye as I did in my right, this only happened to my right one? (not that I'm complaining that I don't have it in both eyes!) I'm just wondering why the right one is like this and the left one isn't.

    Just one more question for now.... is it possible to have optic neuritis even if nothing shows up on the visual field test? (that would probably mean an MRI though! ugh!)

    Thanks so much for all of your answers. I knew I'd find help here.

    Elyse
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    Old 04-29-2003, 12:39 PM   #6
    qwerty75
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    Quote:
    Originally posted by purple2067:
    1.)Is it possible that since my eye pressure increased, this caused the inflammation in the optic nerve?

    2.)Isn't it odd though that even though I had the exact same pressure in my left eye as I did in my right, this only happened to my right one?

    3.)Just one more question for now.... is it possible to have optic neuritis even if nothing shows up on the visual field test? (that would probably mean an MRI though! ugh!)

    1.)That's possible. It seems to be the only thing that was 'different' with your eyes over the past few weeks that could bring on this inflammation. It is possible that this bout of inflammation is a response to the high, pressure. It's very unlikely and unusual though, as I've NEVER seen that before. But, again, I guess anything's possible.

    2.) Actually, it's not very unusual. Optic neuritis VERY RARELY occurs in both eyes at the same time.

    3.) The inflammation of the nerve would have to be very minimal, just barely there, to not show up. The visual field analyzer will be sensitive enough to pick up your inflammation though.

    Your doctor will also probably want to have you checked for multiple sclerosis, just to be sure there are no signs of it at all.

    HTH


     
    Old 04-29-2003, 12:48 PM   #7
    DonnaDe
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    Quote:
    Originally posted by purple2067:
    Thanks guys! All that information really helped me understand this a lot better. But I am wondering how I got this, if I don't have any of the things that Donna mentioned (no MS or family history of it, no infections, no known tumors, no exposure to any chemicals or drugs that I know of, and no known allergic reaction).]
    I would think all the stuff you put in your eyes (especially the steroids) would constitute a chemical or drug

    Have you ever looked at the symptoms of MS to see if they sound like anything you might have? People usually go undiagnosed for years. I know several people who have this disease and at first they were diagnosed with everything BUT MS.


     
    Old 04-29-2003, 05:41 PM   #8
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    Yeah, I guess you could say that I put chemicals/drugs into my eyes. But there has been nothing new over the last few weeks (with the exception of Restasis, which I doubt can cause this).

    The reason I think this is all related to the fact that I had high pressure is because I didn't have this until I had the high pressure, and as soon as the pressure got high, this started.

    I have never researched the symptoms of MS, but my eye dr did mention it. He asked me if anybody in my family has ever had it. I told him that I am going to see the rheumatologist soon and that I am going to ask him to test me for it and run all kinds of other blood tests as well. The prospect of having MS really scares me!

     
    Old 04-29-2003, 05:51 PM   #9
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    Well, I just looked up MS and this is what I found.


    "Well yes, MS can be and often is a very serious disease but almost nobody loses function in all possible areas and some people are affected much worse than others. People with MS can experience any of the following problems either fully or partially - numbness, tingling, pins and needles, muscle weakness, muscle spasms, spasticity, cramps, pain, blindness, blurred or double vision, incontinence, urinary urgency or hesitancy, constipation, slurred speech, loss of sexual function, loss of balance, nausea, disabling fatigue, depression, short term memory problems, other forms of cognitive dysfunction, inability to swallow, inability to control breathing ... you name it. "

    Out of these symptoms, I have the occasional tingling/pins and needles sensation (on the soles of my feet, but I've always attributed this to my very flat feet), some muscle spasms in my toes (again, probably from the flat feet), and depression.

    However, until I got my irritable bowel syndrome under control, I used to go through bouts of diahrrea and then constipation, and as a kid I had a lot of growing pains and muscle spasms.

    I'll mention all this to the rheumatologist and see what he thinks. I'll insist on a test.

    Thanks for all your concern,

    Elyse

     
    Old 04-29-2003, 07:58 PM   #10
    DonnaDe
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    I'm not an expert on MS, but I'll offer you some thoughts based on the few people that I know who have it

    The presenting symptoms can vary greatly, as can the degree one is affected by it. Interestingly, visual disturbances can be an early sign of MS. My sister-in-law's ex-boyfriend was diagnosed about 10 years ago. He doesn't have much muscle weakness, but has to deal with the room slowly spinning... constantly! Even when he lays down with his eyes closed. He also suffers from constant headaches and flu-like symptoms.

    A friend's husband was diagnosed a few years ago after some vision problems (sorry to be vague, but I never asked what they were). He realized he had had a similar attack ten years previously, but had never been diagnosed and was fine in between attacks.

    Our neighbor growing up had the more "classic" signs.. she started with a limp that progressed over the years to almost total paralysis

    Also, MS is not a hereditary disease, although genetic susceptibility may play a part. So you wouldn't necessarily have a family history of the disease.

    I know you mentioned a "test" for MS; unfortunately, it isn't that easy to diagnose. Here is what might be used:

    Diagnostic tests

    Here is a quick guide to the most commonly used diagnostic tests, what is involved and how much they can tell you. The doctor or neurologist may want you to undertake all of these examinations before making a clinical diagnosis.

    Medical History

    The doctor will ask you for a detailed medical history which will include your past record of signs and symptoms as well as the current status of your health.

    When the type of symptoms you have experienced, possibly over a long period of time, are examined their pattern may suggest MS. However, a full physical examination and medical tests will be needed to confirm the diagnosis.

    Neurological Examination

    A neurological examination looks at how well your nervous system is working. The neurologist is testing for abnormalities in the nerve pathways that take messages from the brain to the other parts of your body. They will look for changes in eye movements, limb co-ordination, weakness, balance, sensation, speech, and reflexes.

    This examination may also uncover symptoms that suggest MS, but cannot be used to determine what is causing any problems that may exist. Other possible conditions that produce similar symptoms to MS must be eliminated.

    Testing of Visual, Auditory and Somatosensory Evoked Potentials

    In spite of their complicated sounding name, the point of these tests is straightforward. They are used to measure the speed at which messages from the brain pass along the nerves.

    The speed of messages passing through the nervous system is measured by placing small electrodes on the head, which monitor brain waves in response to visual and auditory (hearing) or sensory stimuli. The most useful of the three tests is the visual evoked potential although nowadays, with increased use of MRI, the evoked potential test are required less often
    These tests are not invasive or painful and therefore do not require a stay in hospital.

    The time it takes for nerves to pass on messages from the brain is an indicator of the condition of the nervous system and is used to help determine whether demyelination has occurred.

    Magnetic Resonance Imaging (MRI)

    The MRI scanner is a more recent diagnostic test and takes very detailed pictures of ‘slices’ of the brain and spinal cord, showing any existing areas of sclerosis (lesions or plaques).

    During an MRI scan the person being tested lies absolutely still on a table that moves inside a large tube which is part of the machine that contains the magnet. The person conducting the test sits in a separate room monitoring the equipment receiving the images; however they can also see the person being tested, usually through a large window.

    There is no pain involved in MRI, but many people find it quite an unusual experience, and it can be both claustrophobic and noisy. Any discomfort can be alleviated by a mild sedative. Sometimes an injection is given in to a vein of a contrast agent containing gadolinium as this can show up new areas of inflammation and may help to make the diagnosis.

    It is worth remembering that the person conducting the test us not usually able to give you any direct feedback and the images from the scan will be sent to your doctor for analysis.

    Whilst this is the only test in which the lesions of Multiple Sclerosis can be seen, it cannot be regarded as conclusive. The scanner may not pick up all lesions, particularly in the early stages of the disease, and some other conditions can produce identical changes in the nervous system.

    The MRI clearly shows the size, quantity and distribution of lesions and together with supporting evidence from medical history and neurological examination, is very significant indicator toward confirming the diagnosis of MS. It is abnormal in over 95% with a definite clinical diagnosis. The MRI is a very useful tool in clinical trials in assessing the value of new therapies, due to its ability to demonstrate changes in the disease’s activity.

    Lumbar Puncture

    There are several tests that can be carried out on cerebrospinal fluid (the fluid which flows around the brain and spinal cord), but usually with MS the patterns formed by proteins are examined.

    The fluid is taken from the spinal cord by inserting a needle into the lower back. A local anaesthetic is given to numb the skin, and therefore whilst it is uncomfortable it is not usually painful.

    This test requires the person to lay flat for a number of hours after the test, and headaches due to dehydration are a noted side effect; this can be alleviated by drinking fluids immediately after the procedure, to help the body rapidly replace the cerebrospinal fluid it has lost. Some people may require an overnight stay in hospital and a subsequent short period of recuperation.

    The proteins in the spinal fluid of the majority people (90%) with established MS form a particular pattern when an electrical current is passed through them, and so this procedure can potentially confirm an MS diagnosis. However, the cerebrospinal fluid proteins of people with early or mild MS do not always show the same pattern, so again may not be conclusive. It is often used when MRI results have been inconclusive.


    I hope this helped some and did not make you crazy!






     
    Old 05-01-2003, 05:36 AM   #11
    ronaldo1
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    Elyse,

    Sorry I have not posted for few days but my boss has been quarantined at home for SARS for 10 days after going to singapore for a holiday and work as well as home has been a total madhouse....anyway enough about me. I was very concerned to hear what you have been going through. How is the pain and vision in your right eye? Has there been any improvement? What did your doctor say when you saw him on wednesday???

    I know you have probably already thought about this, but I read that ON can be caused by a virus and I recall that you said that you had been ill recently. did you mention this to your doctor? It is not necessarily MS in all cases of ON. Apparently, a wide variety of problems have been linked to ON including taking birth control pills (increases the risk of ON) and thyroid disease. My advice would be to get a full check up when you see the immunologist/rhuematologist. Make sure you mention ALL your symptoms and state that you need someone to consider your health from a WHOLISTIC perspective. I think the problem with autoimmune related diseases is that you get different specialists looking at symptoms from their perspective and never looking at the whole picture, making it so hard to diagnose.

    Do not worry about having an MRI. It is totally painless and does not take that long. I had my MRI to rule out a brain tumour and MS (based on pressure/pain in scalp, dizziness, tingling in hands and feet) and I will get my results tommorrow. Please post and let us know how you are. I am praying harder than ever for you and I wish there was something more I could do to make things better for you. You are in my thoughts.
    Christine

     
    Old 05-01-2003, 05:39 AM   #12
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    Elyse
    I almost forgot. You have probably already looked at the MS board...but just in case, there is quite a long thread there about ON. You may want to ask other people with ON or who have had ON, some of the questions you have posted here.
    Christine

     
    Old 05-01-2003, 08:58 AM   #13
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    Quote:
    Originally posted by ronaldo1:
    Elyse,

    I know you have probably already thought about this, but I read that ON can be caused by a virus and I recall that you said that you had been ill recently. did you mention this to your doctor? Christine
    YES!!! I had a very long conversation with my doctor last night and he remembered that I had been sick recently (I always tell him when I am on an anti-biotic, etc... just so he can be aware of everything that is going on). He said that sometimes the cause of Optic Neuritis can be ideopathic (no known cause) or it can also be caused by a virus that can be activated when someone gets sick. He asked me if my illness was an upper respiratory infection, which it was. It wasn't a viral infection because as soon as I started taking anti-biotics I began to get better, but it could have caused some kind of virus in my eye that is causing the Optic Neuritis. He said that's what he believes is going on.

    I had the visual field test (what a pain in the neck!!!) and I had some trouble doing it when it came to the right eye. In my left eye it took me 8 minutes, in the right one it took me appx 12-13 minutes. I missed some of the little bright lights that pop up. (only about 4 or 5 of them). He said this definitely indicates optic neuritis. So I asked what could possibly have caused it, and that's when we started talking about my having been ill recently. He also said that since the pressure was high recently, it could possibly (it's a very remote possibility) have pressed on my optic nerve causing this. He thinks that the combination of the high pressure and the fact that there may have been something lurking around from when I was sick, is what really caused it. There was obviously some sort of virus in there that caused the ON, and the high pressure just made it worse. As we all know, there is no treatment for this except hospitalization and IV steroids. He said he won't do that with me (and I don't want him to!) because mine is not that bad.

    My eyes are just as itchy as ever, and my tear quality is pretty poor but he said that for the time being I cannot have my steroids back. He has promised me that eventually I will start using them again, but not right now. (I've got an unopened $66 tube of dexamethasone just sitting in my fridge! It seems to be calling my name!) I begged him, but I totally understand why I can't use them. He said he doesn't want to add any fuel to the fire while I have the ON. Maybe in another week or so, depending on my tear quality at my next visit, we'll start using them only at night. I'm no longer concerned about the pressure because that is down to 15 in each eye.

    I am still getting used to having poor vision. I asked him again how long it would take before this starts to go back to normal. He said "if I had to guess.... no, wait, with you I can't guess. But usually it starts to go away within a few weeks and takes a few months to completely go away. But I want you to really understand that it is possible for this to be permanent and there is no way to correct it." Great. At least he's being honest.

    You know, I have a friend who has very bad vision in one eye because of Keratoconus (an abnormal curvature of the cornea). In the summer he is going to have a corneal transplant. In a way I am jealous, because at least there is a surgery to correct his problem. If there was any sort of surgery to correct this, I wouls say "great, lets do it tomorrow". I always seem to get the things that there are no cure for, and no way to correct.

    So far my dr hasn't suggested an MRI, because the visual field test did pick up the ON. But I wouldn't have a problem going for one. I have had an MRI before (I think it was on my back when I was a kid, to see why I was having pain - just growing pains though). I have also had several sinus Cat Scans. So I am no stranger to it.

    Christine, thanks for being so concerned. You too Donna. Christine, please let us know what the outcome of the MRI is.

    I have another eye appointment in one week. It seems like such a long time to wait when my eyes are itching and burning and I need some sort of steroid. I have an appointment with the rheumy on may 13.

    Yesterday the pain in my eye seemed to be a little better, but not today. sigh.

    Thanks again everyone,
    Elyse

    P.S. Today I get to have my hair done because I am taking yearbook pictures for college. At least that will make me feel happy for a little while (I'll have nice, silky straight hair instead of my normal curls!)

     
    Old 05-01-2003, 10:57 AM   #14
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    I was getting a little worried when we didn't hear from you I'm not sure what to say about your test results.. I guess they were as expected? I'm glad your pressure is back to normal, but I'm sorry that your eyes feel bad and that you couldn't get a definitive answer on how long it will take for the ON to resolve. I really wish that you could catch a break here. Or find that magic bullet!

    Wishing you at least one day of hair happiness ,
    Donna

     
    Old 05-01-2003, 11:37 AM   #15
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    I was too tired to go online last night when I got home from the eye dr. My appointment was 6:45, but I had to do the visual field test, and by the time they set up for it and did it, it was about 7:15, and then I had to be seen by the dr. So I didn't get home until about 8:45. But I have discovered that I like going there on wednesday nights better than any other day, because saturdays are just insane, and monday afternoons I'm too busy, and I am student teaching on all the other days. Last night the office was very quiet, I was the next to last patient of the day, and I really got to spend a long time talking to him without worrying about making the other patients wait. Next week my appointment is 7:00, so I'll be the last patient of the day and again we can spend time discussing things. Not that I am ever rushed out, but if there are 7 patients in the waiting room, I don't like to spend 45 minutes in the exam room!

    I'm sorry I didn't post last night. I was just so tired, and I had to explain all of this to my parents, who barely even let me walk in the door before they started asking me questions! (my mom wanted to come to my appointment with me, LOL!)

    I have read some of the posts on the MS board, and let me tell you, they scare me. It would be nice if there was just a blood test to diagnose MS. I'll go for an MRI if my doctor thinks it's necessary, but I really don't want a spinal tap! I think I may give my Primary Care Physician a call and ask him what he thinks about me going for an MRI just to be on the safe side. Or maybe I'll ask my eye dr for a prescription for one next week, just to put my mind at ease.

    On a happy note, I got my hair ironed straight today and it looks absolutely beautiful. They also told me that if I ever want to do the Japanese hair straightening (which I probably won't, because I like my curls) that they would use me to teach someone else at the salon how to do it, and they'd do it for free for me! So, it might be something to consider in the future. Right now I have to go put my make-up on and change into my outfit for my yearbook picture, I may even attempt to use a little eyeshadow. (I'll only have to leave it on until I get the picture taken and then I can wash my face).

    I'm going to have to force a smile for the picture though. With everything that is running through my head right now, it's not really possible for me to truly be happy.

     
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