does anyone with ms have this eye symptom

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

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

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

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

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.