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Posted 12/19/2006 2:47 PM (GMT 0)
 

 Hi everyone

 

 Last summer (July) out of no where I became blurry in my left eye and was seeing double vision. I saw an Othomologist (sp?) and he confirmed optic Nerve damage. He sent me right away to see a Neruologist. The problem is I live in Canada and the wait times are LONG! I just had my Evoked potential at the end of November and my MRI a week ago.

 

The eye problems lasted about 5 weeks and the numbness I experianced after hot baths and showers about 8 weeks or so.  It had been about 4 months from the time my eye problems ended until I had the evoked potental. Now the results came back "borderline" the neruo's exact words and the MRI clear.

 

 

My two questions........... 1. After waiting a long time to have an evoked can your eys get better and show a clear result? I see fine out of my left eye now but it still hurts when I am tired. 

 

2. I don't believe I have any MS symptoms (by what I can remember) before the Optic Nerve damage so can an MRI be clear if it is your first attack?

 

 

Not to sure what to do from here......I guess just sit and wait?  I was very very relieved to hear the great results but my symptoms matched to a T. Numbness in my left arm and leg all the time but got worse after showers/baths, extreme fatigue and gosh I was sooooooooooooooooooooooooooooooooooooooooo moody those 8 weeks it was unbelieveable.  Like I said above they lasted about 8 weeks and then just went away.

 

Any help at all would be great.

 

All of you are inspirations and wish you luck.

Sarah

Posted 12/19/2006 4:26 PM (GMT 0)
Hey Sarah!

Welcome to the board! I hope u'll find the support and answers u'r looking for here and will see, as i and many others have, that this is a great place to be. We'll all do our best to explain things and answer any questions u may have.

To answer u'r questions, yes, u can have a clear mri in the early stages of ms. That's not to say u do have ms, only to let u know that the mri may indeed be clear while still experiencing the symptoms of ms. The first question u had was about u'r eyes and whether or not damage to u'r optic nerve would show up after waiting awhile to see the doc. If u'r doc is using the proper equipment to look at u'r optic nerve, and as i understand most (all?) docs have that proper equipment on hand as a normal tool for their use, then yes they can see any damage that is present. As i understand, that doesn't clear up. The symptoms may get better...go away even...but the optic nerve maintains that appearance to show the damage. Did the doc diagnose Optic Neuritis?? What kind of nerve damage if not ON?

The symptoms u describe can all be ms symptoms, but let u'r doc do his work and be patient as he tries to eliminate all the other possibilities. Yes, waiting is a big part of ms dx'ing. I"m in limbo now and have been here since Feb of this year. Many others don't know what's going on for much longer than that...years even. All of my test results have been normal, including the mri's and evp tests. It's just a wait and watch game now. IF i have ms then it'll show up in time. IF u have ms it'll show up in time. That's no fun to hear, but it's the straigtforward answer that we have to accept. In the meantime u can do some things to help u'rself along the way. Start now keeping a journal of all u'r symptoms. Go back to the beginning as u did here and note all of it as best u can remember. Keep up with the duration of the symptoms and how often they occur as well as how they seem to present. i.e. after how showers/baths, when u'r especially tired, etc. Also, start getting copies of all u'r test results. That includes mri films as well. IF u decided one day to go to another doc or if they're needed for comparison later, u'll have them at hand. If the symptoms are or become bothersome...interfere with u'r activities or daily living, u can get help with those as well. i.e. pain or spasticity

This may seem very overwhelming at first. As u said, u had no symptoms u know of before the prob with u'r eye. Hang on tho and keep asking questions and persuing this. Being proactive and following thru with all the testing is u'r best next step. It may take some time to get answer, but it's worth every min of time it takes to know for sure. Keep asking us all u'd like and we'll be more than happy to help all we can. Again, welcome to the board!

rhonda
Posted 12/21/2006 6:08 PM (GMT 0)

 Rhonda...

  Let me start by thanking you for your quick response and then apologizing for the spelling and grammical errors in my first post redface   It is really hard to concentrate with a one year old on my lap.

  I saw the opothomolgist (sp?) a day after I lost my vision and was seeing double. He did confirm Optic Neurtis and sent me to see a Neruologist. The thing is my Neruo is old school and did not take me seriously at all. I waited 4 months for the evoked potential and even longer for the MRI. I know Optic nerve damage will always be there but for an evoked potential will you always fail the test if there is nerve damage? The results for my evoked were "borderline" whatever that means even though it was confirmed I had Optic Neurtis 4 months earlier.

My brain MRI was clear and after my nerou saw that he dropped it. Told me I had Chronic fatigue syndrome. He said nothing about further testing or even that he wanted to see me again.

I have been great since September (symptoms started in July) but those few months in the summer I was sick!!!! I have two children under the age of 2 and could not take care of them properly as I was extremly tired. As well I had constant eye pain and numbness in my arms and leg especially after showers.  My eye is still painful at times.

 For those of you in limbo does your Neruo still see you frequently? Should I see a new doctor or just wait and see if the symptoms come back?

Thanks again everyone

Posted 12/21/2006 6:39 PM (GMT 0)
Sarah,

I am in limboland also. I make regular appointments with my neuro so that he remembers me. I want him to know me and to know what my normal is. That way when he sees me sick again he will recognize it. If you feel that your neuro is not listening then you might think about finding a new one.

Rhonda gave you some very good advice. At this point it is wait and see. I know that is difficult when you know something is wrong and you are looking for answers.

I wish you lots of luck in your journey and ask as many questions as you like!

Lysha
Posted 12/21/2006 7:44 PM (GMT 0)

that's exactly how i started 17 years ago.  for me, ms symptoms come and eventually go but do leave residual effects.  i was put on oral steroinds for the on, but eventually after a few more episodes i'd found the on goes away w/or w/o predinsone.  i personally hate steroids so refuse it.

heat is an enemy to ms be it bathing or weather.

alot of folks have 1 or 2 original flare ups and hope the same for you if you next mri comes back 'unclear'!

frannie

Posted 12/21/2006 10:56 PM (GMT 0)
Hey Sarah

No worries over spelling or grammer. We all just 'talk' here and if there's an error who cares. We know what u'r saying most of the time! I totally understand trying to type with a baby in u'r lap too!! I have three girls and the youngest two are only 17 months apart...so i had babies for about 2ed yrs straight! :)

Yes, i think most of us continue to see our neuro's on a regular basis. U'r neuro should be willing to follow u, even if u'r not showing symptoms at the moment, especially with a comfirm diagnosis of ON. It seems as tho u may need to find a new neuro. If u'r doc isn't willing to see u and follow u, then u'r already at a disadvantage. U need a doc who will listen and note what u'r telling him/her. That doc doesn't have to be a neurologist. U'r reg gp can do the same thing for that matter and if things flare up and he/she feels u need to see a neuro at some point, then u can be referred and would likely see the neuro much sooner anyway. If u'd rather stay under the care of a neuro tho, u should do so! Don't by any means stop on this if u feel more is going on and u'r not being heard. U said u have two small children. If for no other reason than them, u should be proactive on this.

I'm not sure what 'boarderline' means in regard to the evp tests, but mine were normal and i'm still being followed by TWO neuros. All my tests were normal. I'm doing fine as well. I seem to have some residual symptoms that come and go. Some are more active on a daily basis or almost daily basis, but some others come, are very clearly with me for a few days/weeks and then go. Some people have flares and then nothing for years or as someone else said, 1 or 2 flares and that's it. It's different with everyone. The thing is that u don't know what's going on yet. U don't need to dwell on this to the point u close u'r eyes to other things, but u do need to follow it in a way as to be aware of things and patterns. Hot showers making things worse is a symptom of ms (but may also be a symptom of other things). That is heat sensitivity. Here's an example, tho, of how that's different with everyone. I can take a really hot bath and LOVE it. No probs to speak of most of time and the few times i do have probs they are very very minor. BUT...i can eat something hot and it makes my tongue and the roof of my mouth get numb. I'll get dizzy and have to drink something cold to get past it. It doesn't last long..the cold drink helps pretty quickly. See?? That's why it's good to note u'r symptoms...how they affect U ...and see any patterns in flaring of symptoms. U'r doc...gp or neuro...will need to see this. Yes, see another doc if u'r being brushed off. While u'r not having symptoms u can still see a new doc. Just tell him u'r there to establish a patient/doctor relationship and u want him to know u'r history and to be able to call upon him if/when things start up again. Who will u call if u don't have a doc for this?? What will u do? Be proactive. Go get those copies of all the tests results u've had done and the mri films and keep them for that doc. Make copies or have the new doc make copies if u'd like, but KEEP copies for u'rself. Who knows if the new doc u see next will be "the" doc.

I hope this helps and u'r able to find u'r path. Keep asking questions!! U'r doing great!! I hope u'r feeling well today and all is good for u and u'r family during Christmas. Best wishes to u and please keep updating us on how u are.

rhonda
Posted 12/25/2006 8:13 PM (GMT 0)

Hi Sarah,

 l had optic neuritis 5 yrs ago. l had no symptoms of ms. Except for some double vision when l was tired no other problems with my eyes. l was sent to an opthamalogist who sent me for an emerg mri. The results were good and he told me l definitely did not have ms. l thought that was a strange thing to say. My eye eventually got better over the next 6 months and l didn't have to go back to the dr.  2 yrs later most of my body went numb over a very short period. l saw a neurologist through emerg. He referred me back to the eye specialist which l thought was odd because my eyes were fine. Turns out this dr  was an ms specialist. This time after 6months of what seemed non stop appt and tests l was told l had ms. l also live in Canada and l know l was very lucky to have been able to get a diagnosis so quickly. lt is almost impossible in Canada to pick and choose specialists. l would keep track of my symptoms over a period of several months and discuss it with your family dr. lf he agrees with you perhaps he can then contact the ms clinic in your province.

Hope you are feeling better and are having good holidays.

Posted 12/25/2006 8:42 PM (GMT 0)
Sarah I live in Canada also and where I live choosing a doctor just does not exist.

With my first attack I went to the emergency and got a lot of tests done that day. The ER doctor told me if I went the normal route of waiting for a referral it would have taken at least 3 months to even get CT SCAN and at least a year for a MRI. So next time you feel numbness or eye problems go straight to the ER. It is so much quicker. Though the ER I got a CT SCAN that day, all the blood test where done that day and I seen a neurologist in 2 weeks after that and had an MRI in 2 months. Still it is not the greatests but it is better than 6 months of waiting.

Also get an appointmment with the neurologist again you probably have to get another referral from your family doctor. That is how it works with my neurologist. My family doctor is kind of like the receptionist for the neuro...LOL...
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