does anyone with ms have this eye symptom

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letamarie
New Member


Date Joined Nov 2006
Total Posts : 7
   Posted 11/14/2006 7:37 PM (GMT -6)   
I just found this forum as I dig for information on what might be wrong with me.  I'm hopeful that someone has experienced it and can explain it to me.  It began about two years ago and only lasted a month or two at that time.  It has reocurred two more times since and this last time has continued (going on 3 months now).  What happens is that my eye bounces/jumps mostly up and down but has gone side to side at least once to my recollection.  I am told that my eye is not visibly moving.  It lasts about 10 seconds or so and messes my vision up terribly when it happens.  If I cover my eye I still have a strange sensation but my vision is corrected.  I have been to my GP and a neurologist.  My neuro exam was clean but my MRI revealed about 18 lesions in my brain.  I have intermittent mild numbness on the bottoms of my feet, fatigue (constant to some degree), and mild headaches/eye pain.  I also had an episode of significant arm weakness and hand twitching but it only lasted about an hour.  I am suppose to go see the local MS specialist but I procrastinate. I guess I'm not convinced that is what's going on.  I have read a lot and MSers seem to have much more severe symptoms then me.  I guess it could just be too early to tell.  I mostly just want my eye to quit wigging out.  Sorry to babble but does anyone have or know much about what might be termed ocular flutter or opsoclonus and did your MS symptoms start out mild and then progress?  Thanks

mesea
Regular Member


Date Joined Nov 2006
Total Posts : 162
   Posted 11/14/2006 8:04 PM (GMT -6)   
yes my symptoms are mild but seem to be getting more severe. If I were you I would call the ms specialist and make my appointment asap.
It may not be ms but it never hurts to be sure. I have trouble with my right eye. I have occassional needle-like pain in it, double-vision at a certain point and blurry vision.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/14/2006 9:57 PM (GMT -6)   
Hey Latamarie

Welcome to the board!! I'm glad u found us and hope u'll feel comfortable and know u can ask anything u'd like. We'll all do our best to help.

U'r symptoms sound a lot like ms, but could also be many other things. However; if u'r doc feels it's ms then it would be well worth it to go on to see the specialist and get a final word on it. Then u will likely need to address disease modifying drugs. Has u'r doc discussed that with u? I agree with Sheila, i'd see the neuro soon about u'r eye while it's still going on. Have u researched Nystigmus?? It may be what's going on with u'r eye, tho the fact that it's not visible to anyone else may not be typical of that disorder. If u've not done so, check out the national ms society's site. Also, u could do a google search on nystigmus and u'll get lots of hits. The lesions u have could be from many things, including ms. Did u'r doc elaborate on that with u? I really think a visit to an ms specialist is in order. What do u have to lose besides the co-pay? At least u'd get a final word on this and be able to move forward with things. Many people with ms aren't significantly impaired. In fact, many don't go on to experience significance impairment. The fact that u see others who are far worse than u'rself doesn't mean u don't have ms. It just means they're worse than u. Best wishes to u on this and i hope to hear from u and ur doc visit very soon.

www.nmss.org

rhonda

letamarie
New Member


Date Joined Nov 2006
Total Posts : 7
   Posted 11/14/2006 10:18 PM (GMT -6)   
Thanks for your input.  I was told that it isn't nystagmus. The neuroligist did discuss other causes of the lesions including Lupus and Sjrogens and the GP mentioned migranes.  I was sent for blood work which was all negative but I'm not sure what was ruled out.  I have recently found another reason to procrastinate.  I read that I should get disability insurance and life insurance before my medical record had a diagnosis of any chronic disabling disease.  I have been slowly working on it.  You guys are right though.  I need to make the appointment.  I never thought about the fact that the eye symptoms being there at the time of the appointment would be helpful.  thanks again. 

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/14/2006 10:41 PM (GMT -6)   
Hey Again Letamarie

YES...get u'r affairs in order before u have a firm dx. Disability ins as well as life and be sure u'r med/health ins is up to par too. Take it from someone who has rotten ins, u don't want to have to foot the whole bill for u'rself. I'm not even dx'd and already i've amassed quite a med bill for my so called 20%. The meds are quite expensive, so u'll certainly want to follow up on this. Please do see u'r doc as soon as u'r able, tho. Also, for u'r benefit, it's a good idea to get a copy of all tests and results done for u'r personal use. U never know when u'll need to have those for other docs or for comparison later on. U may also want to keep a journal of all that's going on with u. Symptoms can be hard to recall in the docs office and it'll make it easier for that purpose as well as allowing u to see any trends/patterns that may be happening. Take care and let us know how u'r doing.

rhonda

letamarie
New Member


Date Joined Nov 2006
Total Posts : 7
   Posted 11/14/2006 11:04 PM (GMT -6)   
Good advice.  I have some of my records and it wouldn't be very difficult to get the rest.  I kept a log for a while cause I thought the neuroligist would ask more questions about frequency, severity etc.  I stopped doing it after that appointment but new things have arisen so I'll start again.  I recently noticed that I scratch my head a lot.  I think I read that it's a symptom of Lupus but I don't have any of the other symptoms (at least from what I've read). Boy, disability insurance is more expensive then I thought it would be.  It over-whelms me thinking about all of this. 

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/14/2006 11:14 PM (GMT -6)   
Yes, it's expensive and hard to find companies that sell it as a stand alone product. It's worth it tho if u feel like u'r gonna have this dx.

On the head itching thing, i'm not familiar with that, but i'm not familiar with lupus either. I imagine others will be along in time and maybe they can offer some input on that.

Yes, it's good to go back if u can and update u'r log to this point. At least the major symptoms u remember and the longevity as well as the differences in how severe they were from one event to the next...maybe they're increasing in strength, etc.

Step back and take stock of all u need to do. Make a list if it'd help...i have lots of lists! Yes, this is pretty overwhelming, but not too bad if u know what u need to do and can do it in small steps. Keep asking questions and posting and we'll be here to help u with it all.

rhonda

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/15/2006 9:26 AM (GMT -6)   
Sometimes we start to attribute EVERY discomfort to "possible serious disease". Could your head itching simply be dry scalp, or dandruff?

As for the rest of your symptoms, denial is a good thing for awhile, but eventually you have to "bite the bullet" and get to a doctor. Not every serious disease will require long term disability or medical care; some of them are even treatable and cureable. But you won't know until you get a thorough and comprehensive workup, and find out.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


letamarie
New Member


Date Joined Nov 2006
Total Posts : 7
   Posted 11/15/2006 3:31 PM (GMT -6)   
I'm glad I found this sight.  It has already been very helpful.  I contacted the insurance agent and the disability insurance ball is rolling. As soon as that is taken care of then I will immediatly go see the specialist.  I read on another thread about how getting on the medication early is important.  thanks for your warmth and especially for your advice.

mesea
Regular Member


Date Joined Nov 2006
Total Posts : 162
   Posted 11/15/2006 5:40 PM (GMT -6)   
I'm so glad you've made the decision to find out. You never know. It may be something that you can recover from completly or it may not be but u don't know until u have all the tests and find out. Makingsure that u have adequate med insurance before finding out for sure is a good idea. A lot of companies won't cover you for pre-existing conditions or the premiums are prohibitive. Let us know how it goes with the dr.

Sheila
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