new with some questions

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mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 6/22/2008 2:04 PM (GMT -6)   
Hello everyone.  I hope you don't mind, I have some questions about ON.  Is it possible to have a mild form of it and so unsure if you have it?  Or is a "you'll know if you have it" scenario, like vertigo.  I read an article that said if you had to wonder if you had vertigo, then you didn't have it.  I started seeing floaters a few weeks back (maybe 4?)  I know they have nothing to do with ON, or at least I didn't see anything about it.  Then about 2 weeks ago I started seeing halos around lights, and they are quite large.  When a car has it's turn signal on, it looks like there is an aura around 1/2 the car.  A few days ago, I started having problems reading at the computer screen, and have had to increase the font.  Now today, it seems that colours aren't quite right, especially reds.  It also looks like everything is a bit darker.  I do have a harder time seeing indoors than out in the sunshine.
 
I now wish I hadn't read up on anything for ms, b/c I'm not sure of my symptoms, if I am just imagining them or making too big a deal out of things that are normal, kwim?  My doctors suspect ms or fibro, and have convinced me to wait another month to see what develops.  It was that or make an appointment with a rheumy.  There is a history of both ms and fibro in my family.  I have been feeling fatigued, weak, off balance, dizzy, vertigo, aches, and numbness and tingling in the arms and legs.  Also 'fibro-fog', if that's what it is, and since the beginning of May, pain in the cheeks, then going in the teeth, jaw, temples, chin, and ears, maybe TMJ?  I also thought of 'tic douloureux', but it isn't a 10/10 pain, plus it's bilateral adn almost constant.  It last at least a few hours, in waves.
 
My doctor did the pressure point test for fibro, and I have 12/18.  I passed all the neuro tests, but he said I do have hyper reflexes.  Nothign to worry about if I have always been liek that, but could indicate problems if it's something new, which I can't answer.  But I don't have Babinski's, although he really has to dig to get that particular reflex going.
 
I've been posting in the fibro forum, and doing lots of reading there, and my symptoms seem to fit there.  But they are all so similar to ms, who can tell?  Thoughts anyone?  I'm driving myself crazy with this waiting.
 
Thanks for reading.  I do wish you coudl pick your fonts though, so I woudln't have to scroll my screen. :)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 6/22/2008 4:50 PM (GMT -6)   

Hi Mamanan,

I am sorry to hear of your symptoms and problems.  ON can only be diagnosed by an opthalmologist.  An opthalmologist can see if you have it during a routine exam.  It is a condition or a syndrome and not just a symptom like vertigo.  Vertigo is just that feeling of motion even when you are not moving.  Optic Neuritis is inflammation of the optic nerve.  It can have a couple of different causes but it is frequently associated with MS. 

MS is usually diagnosed with several tests and it can take months or even years to get that diagnosis.  Most need to have neurological symptoms that show up in an exam (reflex, strength, balance etc.), lesions on the brain or spine that show up on an MRI, a lumbar puncture that shows oligoclonal bands, evoked potentials, and blood work that rules out all other causes.  You don't have to have MS type results in all of those tests.  People can vary on what is affected. 

I truly hope you do not have MS.  Good luck with your quest for answers.  Feel free to ask questions and welcome to the board.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 6/22/2008 6:08 PM (GMT -6)   
Thanks for the reply, Gretchen. That article just made me laugh, b/c having suffered from vertigo when I was in my early 20's, I knew what they meant about that. If you have it, you know, the feeling is so intense.

I was just wondering if ON was the same scenario. I mean if I saw the black dead spots, then I would know something was up. I was wondering more about the acuity and saturation of colours. Is it that drastic of a difference, it would make you go to the doctor's right away, or can it be so mild as to almost not notice?

I'm really trying hard to not dwell on ms. I saw 3 of my maternal relatives degenerate from it, and it scares me. about 3 years ago, I had vague symptoms that made me start to wonder about the decease. But not enough to make me go to a doctor with my concerns. Then when I got pregnant with #4, I felt so good, I knew then that I had been sicker than I had thought. This year the symptoms started again in March, mild through April. In May the facial pain started, with vertigo and numbness in my foot and face. I went to my doctor's then, who went through a bunch of blood tests. While he waited for the results to come back, he was hoping I would just get better, lol. When I didn't, he got me to see his collegue who specializes in neurology. He's the one that did my neuro tests, and said I was fine. They brought up fibro, which sounds very plausible. But instead of sending me to the rheumy, he wanted to wait another month to see if anythign else develops. His reasoning was those hyper reflexes that concern him. So now I'm worrying again :(

If someone could tell me that no, the difference in eyesight is very drastic, then I think I could stop worrying. Same with those annoying pins and needles and dead spots. When I get them, they are usually, but not always, bilateral. If you could tell me that they are NEVER bilateral in ms, maybe I could stop worrying then too, lol? I sure thought of fibro as a ray of hope, when the doctor mentioned it. It would mean that I am not crazy, lazy, whatever, imagining these symptoms. But reading the fibro forum, I'm not so sure anymore. The pain those ladies have to endure :( I've been having a pretty bad week for pain, I'm trying to brace myself for a life of that. Still, I think ms is still the worse of 2 evils. I'm just making myslef sick with worry waiting for my next appointment, or the next tick or twinge.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 6/22/2008 8:14 PM (GMT -6)   

Mamanan,

I would be more worried about your anxiety about being sick.  You seem very worried and that in itself is a reason for concern.  General anxiety and hypochondriasis (being anxious about being ill) is also a very real disease that needs treatment for you to feel your best.  I know that with MS, there is a wide variety of symptoms.  It really depends upon the what part of the brain or spine has been damaged by demyelination.  For some, vision problems are extremely drastic with total loss of vision or loss of color vision being very obvious.  For others, it may be severe eye pain and double vision.  Numbness can be even more varied than that.  I would try to relax and just keep a journal of what you are experiencing and bring that to your doctor when you see him next.  Hang in there.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


mamana monster
Veteran Member


Date Joined May 2004
Total Posts : 2236
   Posted 6/25/2008 10:30 AM (GMT -6)   
Mamanan,

Welcome and I hope you find some answers to your symptoms in the near future. I agree with Gretchen about the anxiety, try not to worry yourself silly, it doesn't help. ;) If it did I would be cured of any and everything! Ha!

ON was the first symptom I paid attention to, I may have had others for several years and just thought, "man it stinks getting old". I have had a variety of symptoms with ON, anywhere from dark "clouds" as I like to call them in the middle of my vision where I couldn't see anything through them just around them, to blurred, double vision. They last minutes or hours, sometimes the blurred vision last days, or weeks. It is just very difficult to say what different people will experience. Try what Gretchen mentioned about the journal, it is a great idea and will be very helpful for you and your doctors to determine any patterns etc. Try to write down what you were doing when the symptoms occurred, resting, exercising, eating, and exactly what they were and how long they lasted. I hope you find some answers soon, I know it is hard but try to have patience.
Blessings!

 

 

"Be yourself. An original is always worth more than a copy."

 

Dx'd with Ulcerative Colitis (pancolitis) 2004 in remission...no meds!

 2008...Multiple Sclerosis...Avonex once weekly

 

 


spikes4444
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 6/26/2008 11:28 AM (GMT -6)   

Hi guys,

I was reading your questions about ON and I figured I would let you know about my experiences with it. For me, my eyesight got gradually worse over the course of about a week. At first my vision was blurred, then it progressed into almost complete blindness in one eye. Gradually my sight is returning, but the central area of my vision is the last to come back. I also have trouble with reds, at first they were completely voided from my sight, now I see them as orangy, i'm told the last thing to comeback is light sensitivity because as of now I still feel like I am looking through a thick cobweb, and it's been almost two months!

ON is really quite easy to diagnose as it was mentionned before. Initially your optic nerve is inflammed, so any opthomologist can detect it. If it has been awhile since your attack your pupil reaction will still be slower than the eye that wasn't effected, which means that it should still be able to be detected.

The most important thing is to NOT STRESS about what it means, because that will wear you down. Have they done an MRI on you yet? They did on me and found 9 legions, but still have not dignosed me. I find that we almost look for other symptoms when we are told that ON can be a big indicator of MS, but the best thing to do is to stay positive and enjoy your life.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 6/26/2008 12:12 PM (GMT -6)   

Hi Spikes,

Welcome to the forum.  So you have had ON and you have 9 lesions and no diagnosis!!???  What is the hold up? Are you in Canada?  I have heard that is much harder to get a diagnosis and treament there.  I hope you can get on a progression therapy soon.  Thanks for your post and let us know how you are doing?


Gretchen       co-moderator MS board       diagnosed with MS July 2006


spikes4444
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 6/26/2008 4:15 PM (GMT -6)   

I am in Canada, and yes it is quite difficult to get treatment here. You have to have at least 6 legions present on your MRI and at least 2 episodes in 2 years, this is my first one. So i'm taking part in a study, so hopefully I am not getting the placebo!

From what I have been told, severe cases of ON can cause quite a few legions on the brain, I haven't got to read the MRI with my neuro yet, but I am keeping my figers crossed that they may have all been caused from this episode, or that they are not active.

I know that this disease effects everyone differently, but I was told that at my age, I have a fairly good chance of having episodic intermittent MS. Which means that over time it may become progressive, but not necessarily. I am a 26 year old female, does anyone know if this is true? Or do you have any stories you can share with me? I'm just learning, and let me tell you, the 9 legions thing really freaked me out. I have also been told that legions can be caused from head injuries, which I have had a lot of as an athelete. Anyone have a take on this? 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 6/26/2008 5:43 PM (GMT -6)   

Hi again Spikes,

Yes it is true that generally the earlier you are diagnosed the greater chance you have that this will progress slowly.  It is not always so but it can be and it offers a lot of hope.  Does this second flare that you are experiencing mean your second episode?  I would keep pushing for a solid treatment and not a possible treatment from a study.  Most current researchers feel that the earlier you get on a progression therapy the better your chances are for avoiding disability. 

I wish you the very best of luck.  Stay as active as you can.  Exercise and eat well and take good good care of your body.  Again, I am glad you have found us here.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


spikes4444
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 6/26/2008 11:25 PM (GMT -6)   
Sorry for the misunderstanding...I haven't had a second flare yet. That's why I am taking part in the study because otherwise I will receive no treatment at all unless I experience another episode, or I have more legions present in my follow up MRI.

Thank you so much for all your support, it's great to find a place to talk to otherrs considering it is such a diverse disease that effects everyone so differently. You have been great and I am looking forward to discussing anything that comes up further with all of you. I wish all of you well...

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 6/27/2008 10:27 AM (GMT -6)   

Oh no apology necessary.  With my MS brain, it is so easy for me to misunderstand.  I was just hoping you could be sure that you are getting the meds you need. 

I am glad you are enjoying HW.  We also have a live chat every Monday afternoon.  Watch for reminders and topic anouncements. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006

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