Advice needed for appt Tuesday

[Cann1980]

So I am going to get results on Tuesday of my MRI last week.

I have posted previously but my basic story is Diagnosis of ON .. Iv steroids worked well vision was great.
Had bad head cold .. Eye was going pretty wonky again.
Head cold gone .. Eye better but not as good as it was after steroids. Still a bit staticky.

MRI of head and optic nerve.... I have braces and they may not have had a good shot at the optic nerve and I may have to go back.

Other symptoms I may have are fatigue, heat bothersome but not intolerant, bad neck for 4 years on and off, numbness and tingling in hands feet. All of these cn be explained in other reasons other than ms.

So my question is... If my MRI is clear do I carry on and sleep well at night or do I ask for further specialists? Another MRI? I think they will do the MRI again anyway once my braces are off.
My doctor currently in care of me and MRI results is an eye specialist.
I feel like I should just be happy with a good result... And forget this ON happened. Is that wrong?

I feel like I want an answer but if there are no lesions I don't think I will ever have an answer.... Should I push for other testing? I am lost.

Fingers crossed it is clear!! :) thanks in advance!

[Cann1980]

Thank you ren!
My children suffering are my worst fear.... I try not to think if that but they are always in my thoughts. I have a generally positive attitude so this is just going to be another piece if me :)
Once I figure it all out that is lol ... If that is possible .. What a learning curve.

[rendean]

Hi,
I waited for 4 years before a diagnosis. Once I recieved it I could begin treatment which was my goal. I had had MS for over 30 years before dx without significant deficients so don't worry about the future and your girls, just focus on a dx so treatment can begin. Life is good , even with MS.

Keeping you in my thoughts,
Ren

[Cann1980]

Ava and grandmalaurie ... I feel for you both I can't imagine going so long without answers.
Ava I hope you find answers tomorrow at your appt.

I am all mixed up in how I feel... I am a bit like cubbiesfan where I don't want to believe it true and maybe perhaps it is Lyme disease or a mimic... Will they test for that? Is this it? Am I just going to be diagnosed and that's it?

The MRI did say multiple lesions caused by ms/ Lyme disease/ etc etc do I have hope of something else with my ON attack included in the picture?

Does this mean my lesions are in the "ms zone" so I won't get a non typical result blabber from the doc? I think that would be very hard to take ... Like Ava waiting and waiting for answers.

Do I sound stressed? I think I am more confused than anything... I know there are no answers for the future but I am just lost as to what comes next.. Even with reading all the health boards I have so many questions... In due time right!

Ava.. I do look forward to possible treatment if it is helpful... I never knew how crappy I felt until I found out I was not supposed to feel that way. After a dose of iv steroids I felt like I was on top of the world minus the side effects of prednisone.

[grandmalaurie59]

I agree with AvaQ.

I don't care anymore about what my dx is....I just want a dx so I can know what I am dealing with and hopefully get treatment!

The not knowing why my body is 'freaking out', and not knowing how to live is very depressing to me.

Good luck and prayers tomorrow....please let us know how it goes!

Laurie :)

[AvaQ]

Yes, I had an MRI a couple of weeks ago and see the neuro for results tomorrow. I've also had a sneak peek at my results and I'm not expecting too much as my lesions are 'not typical of MS' (same story as when I was investigated back in 2005/2006). But maybe I'm just cynical after having been through this once before. :)

I hope you aren't too stressed about your MRI results (easy to say, I know). I take the view that irrespective of what shows (or doesn't) in testing and MRI's, my body is going to keep doing it's own thing. And while I don't WANT to have MS, I WOULD like to know what's going on with my body - because maybe then I can treat it, fix it, or manage it better. So if you're getting really worried about a possible MS diagnosis, just try and remind yourself that a 'name' doesn't change anything about your body. But what it CAN do is allow you to get treatment, and maybe make your life better than what it is now without treatment. Easy for me to say, I know. :)

But I'll be thinking of you! Let us know how it goes with your doctor.
Best wishes, Ava

[Cann1980]

Ava.. Have u had a MRI? Thank you for your kind words:)

Cubbiesfan... I have three girls 7, almost 5 and now 1 :) they are my world. I think of them mostly while facing a diagnosis.,, I don't want them to have a non active mommy or feel bad for their mommy.

I am ok too! Thx! :) chin up!,

[cubbiesfan918]

My thoughts are still with you. Know that you are strong. I really hope you are okay.

[Cann1980]

Can't type much but I got a sneek peek at MRI results... Nice to know people.
Many lesions the largest being 12 mm .. Not sure how many yet.
:(

[AvaQ]

If your current specialist is an eye specialist, I'm guessing he will send you to a neurologist if anything 'strange' appears on your MRI.

I'm not dx, but have had MS symptoms for years and see a neuro on Wed after my latest flare up (legs collapsing). I went through the wringer back in 2005/2006 and saw a ton of specialists - ending up with a 'token' diagnosis of 'chronic pain condition'. Over the last few years I've basically just managed my symptoms as they come and go - its just that this latest episode was pretty extreme, hence the return to a neurologist.

From all accounts, MS can be hard to diagnose in its early stages, or if you don't have 'classic' symptoms and MRI results. Some people wait years for a diagnosis. I think seeking out specialists is a decision you have to make for yourself - if you have symptoms and you know something is wrong, then keep looking. Just be prepared that there may not be any 'quick' and certain answers, and that it may take more than one doctor to get those answers.

Wishing you all the best,
Ava

[cubbiesfan918]

I'm sorry about your neck also! I have pain now in my shoulders that I are mysterious. I try to no longer self diagnose; nor do I want to pin everything on the Dx.

If you can believe it or not by the time my C Section date arrived it had mostly slipped my mind. I also knew within a day of my MRI that there were abnormalities that made my Neuro want to see me a week later. That week was a cold hard reality check that prepared me for the worst. I think I would have taken the blow harder without the heads up. I really hope you get wonderful news next week!

[cubbiesfan918]

I will be sure to keep you in my thoughts this week!I am also really sorry to hear you still have vertigo :(

Happy Birthday to your youngest! How many do you have?

[Cann1980]

I never actually had a neck injury... Just woke up one day 4 years ago and could not move.. Literally had to hold my head while my husband got me up ... I could not even roll over in bed bc of pain in my neck.
I now am very cautious of pillows .. Bras anything than can and will cause any stress to my neck. It comes back every once in awhile but not as bad as the first time.... I don't know if this has anything to do with ms symptoms just threw it in there bc it is around my spine thought it may be a part of the puzzle.

I can't believe u had to wait 9 months... Must have been soo hard!

[Cann1980]

Thx cubbiesfan... I did read your post previously.. It sounded a lot like mine!
I actually contribute the numbness to carpal tunnel I guess... And I blame the feet on just sitting weird etc... I also have a blood clotting disorder which I don't think causes numbness but I use that for excuse too.

I think I am prepared for there to be something to show up ... It makes sense.. I am not prepared for a diagnosis. :(

I keep my chin up and pray for best!

Congrats on your new little one! My youngest just turned 1 this week! :)

[cubbiesfan918]

Hi There!

I hav e been where you are. Due to your neck injury, I'm assuming you con trubute your numbing etc to this? I was the same only with a back injury. My ON last Aug is what led to my diagnosis. I was Dx 4-1-13

I had to wait for MrI bc I was pregnant, in the meantime I researched explainations for everything. I swore there was mimic, I couldn't have MS. Two weeks postpartum the MRI was performed; lots of lesions including one around/near the optic nerve.

My method of coping was to prepare for the worst and prayed for the best. It helped me accept and mostly cope with the Dx. I respect that we are all different, much like the disease.

If your MRI is neg continue to fight for answers and listen to your body. Any numbness I ever encountered I wrote off. The ON was an eye opener for me. I hope you find answers soon and send many wishes for your journey.