[trixlynn]

So, all the Dr.s I talked to yesterday said, if it gets worse go to the er.

My question is, what's worse?

I woke up this morning and the pain in my eyes is worse. The vision is blurrier.
The tingling sensation in my lower body has gone up into my lower ribcage.

Is this what he means? I feel like going to the er is a waste of resources. They'll just tell me I've got a migraine.

Tracy

[NurseNancy]

hi tracy,

if i'm remembering right, didn't the eye dr say you had optic neuritis?
if that's true i'm wondering why you're not being treated with some steroids.

just because they may not have firmly diagnosed you doesn't mean they can't treat symptoms. just my thought.

i would think that worse might mean losing vision, mobility, trouble with breathing or your heart, severe pain. is there a friend or family member you could kind of team up with for help?

start to get copies of your test results from your drs. get copies of your mri's.
then begin to amass a medical file on yourself. the reason? 1. you learn many things by reading your own records. 2. it's good to have these things in case you see another dr and can show them your results.

keep us posted ok?

[trixlynn]

The neuro (who is the head of the local ms clinic) said that because I had had the on so long it wouldn't be worth it to treat it.
?
I don't understand.
Any Canadians? Can you get copies of your test results etc for yourself?
Tracy

[NurseNancy]

oh, forgot you were in the canadian system. that's a good Q.
here in the US it's our legal right to have access to our medical files.

or, you could just ask nicely and maybe the office will give it to you.

[MSbelle]

Yes I'm Canadian.

I've never been able to get my neuro to give me copies of my stuff unless I'm there in an appt with him.

Are you in Toronto by any chance?

[Kitty]

I had ON but did not take any steroids. It took about 6 months for my vision to return to normal.

I have been told by my Neurologist that if a new symptom lasts longer than 24 hours then it's considered an exacerbation.

I have had what is considered an "exacerbation" but I don't contact my Neuro whenever it happens. All he can do is offer symptom meds (steroids) and I usually just tolerate whatever it is (dizziness, vision, balance, etc.).

Some Neuros like to treat more aggressively than others. Mine knows that I don't like taking anything except in severe cases. Once you find a Neuro that you like they'll get to know what you can tolerate for symptom relief.

[CarolM]

I'm Canadian and I got copies of all my MRI reports from my GP. If I have blood tests, I go online and get them myself from LifeLabs. When my husband goes to the kidney clinic, they are more than happy to give us copies of any test that he has. You have to ask - they don't volunteer to give them to you.

C