This is not my primary form of research just picking people's brains who have suffered from this or who had family who dealt with this.

I'm 43. 18 months ago I had a bout of Optic Neuritis. Steroid treatment, worked fine, blood tests were all negative.

No lesions on brain.

Had a second bout this week. Went back for steroid treatment. Worked again, but now the MRI shows two lesions on the brain. One is current inflammation, and one possibly from prior bout or something not that serious that I didn't consider a flare.

Neurologist met with me and told me there are many preventive drugs for flare ups that exist today that didn't exist 15-20 years ago.

Anyone with tips on lifestyle changes, diet changes, exercise regimes, or tips for living with a body whose immune system decided to randomly attack their brain?

Certainly seems manageable, but interested in any tips.

Some of you may be watching my Ryan DePaulo defense.

I'm still on steroids.

Off the IV, but on the ween off.

Trying not to spend too much time with my family and friends, as my behavior is a bit aggressive.

I am new to MS and steroid treatment.

All help is welcome.

Sorry to hear about your condition, you'll make it!

What is your body-mass index? Might help for the advice. Current exercise?

I'm overweight. 6'0, 228. Not sure what my body mass index is.

I smoke (which they say is real bad for what I have) and have a garbage diet.

I know diet and exercise can help.

Little nervous about the meds. All seem to have terrible side effects. I spoke with a neurologist during my hospital stay, but haven't sat with them for an ongoing treatment options yet. I don't want to fight what I have an cause myself worse problems with side effects. And, I don't want to really hear from a neurologist, "Just try this one and then we can evaluate the side effects after". I want a real good understanding of what I am getting myself in for.

Started jogging about a month ago.

Up to two miles. Trying for a 5K at Thanksgiving.

My run was really bad today.

1.5 miles. Not sure if it was my disease or the steroids.

Thought, given my rest, I could have pushed to 3 miles today.

Was excited to push a big run, but, I guess I am still on meds. Body felt fine but my breath was hard.

I think trying normal health advice is the way to go. Like exercise, good and right amount of food, and some attempt to cut down smoking. Have mercy on yourself though, the cliché goes like this: small steps, small steps.

GL!

good luck bud

Ran 3 miles today. Started my training before my diagnoses.

Farthest and best run yet.

Been hesitant you Make the appointment with the neurologist. Will do this week.

As someone newly diagnosed happy to share the highs and lows of this diesease. If no one here cares that is fine too.

So, the MS specialist won't meet with me without reviewing my records.

They have my records from my stay at Wills Eye.

The nurse said, NOPE! Fax them here!

So, I called the record keeper yesterday. No response back.

A little frustrated. I need help and caught in hospital hell.

I will call the record keeper again tomorrow.

If anyone has tips on how to navigate getting the information to the specialist, happy to listen!

I mean, the nurse at the MS specialist offered no help on how to get these records. Send them to us or we won't meet with you.

She has no understanding that stress makes this worse and is making getting an appointment stressful!

Did run 1.8 miles today. Up and down hills. Was a fine, but not great run. Could have pushed myself but felt by stopping more likely for a better one on Saturday.

Doing really bad on Walls Protocol. Still smoking and eating like ****. Kind of holding back on eating, driking smoking habits till I meet with a doctor that refuses to meet with me until they see records (MRI, hospital visit, ect.) that they already have.

So, I will call the person with my records tomorrow.

Every time I fail, I blame my MS. My girlfriend tells me to stop the pity party.

My runs are worse, it is the MS. I can't focus enough at Big Staxx, it is MS.

I go blind, it is the MS.

The disease encourages anxiety and depression, but the people that love me tell me to suck it up and be a big boy.

Time to stop whining. Meet the neurologist. Stop being afraid of what might happen. Focus on what is happening.

Either way, I shouldn't be afraid of MS, MS should be afraid of me.

Let's GO!

My friend has a similar problem, I’ll try to clarify his treatment.

Hey man, that really sucks. I know I made fun of you a bit on Ryan DePaulo thread but this is real life and totally separate.

I don't have any experience with MS but do with quitting smoking. I found it easiest to try reducing it to only when absolutely necessary. IE a good 2/3 of the cigs you smoke aren't out of need but just boredom or habit. I'm driving my car I'll have a smoke. I got 10 minutes before going to see the movie, I'll have a smoke. Etc etc. Thus should bring you down to a only when you need it system of just a few a day and trust me, you'll know when those times are.

The main reason for this is to try to get the habit of casually smoking out of your system. Once that happens, then you just quit cold turkey. That's really hard but if you try to remove your triggers like alcohol or coffee for a month or two then it's much easier. I didn't drink for maybe 6 months out of fear I'd relapse.

Three worst part was the night sweats and itching. My entire body would itch like crazy when I later down to sleep at night. Barely slept for like 3-4 days until that passed.

If you're serious about attacking this disease see my last post in my thread "ITT we discuss the optimal diet: A Whole Food Plant Based Diet". Good luck man. I wish you the best. Not only do you have plenty of hope, but to a huge extent you control your own destiny.

So, the emergency room doctor called me today.

I tested positive for ANTI MOT.

This is different from MS, yet same symptoms.

However, if I have this, and not MS, will look exactly like MS on an MRI.

That said, if I went to the MS specialist without appropriate blood work they may have treated me for MS.

My limited research of ANTI MOG Is that they mistake it for MS many times. Brain lesions. Optic Neurosis. However, if you have ANTI MOG and the misdiganosis you with MS the drugs that treat MS makes ANT MOG worse.

If you are diagnosied with MS, please ask for a blood test for anti MOG.

The drugs make it worse for no reason.

I asked my ER doctor, who called me, if I should still see the MS specialist. She said yes, please see both doctors. I may have both. But, need to continue treatment with my opthaneurologist.

Might have Anti Mog. If you are diagnosed with MS and treatment not working, please demand a MOG blood test.

No idea what MOG ****ing means. It is very similar to MS, but different. If your MS med's are not working, you might have MOG.

MS med's makes MOG worse.

Anti MOG

Still some horrible anti immune disease.

I meet the MS specialist October 17th and the MOG specialist on November 4th.

My girlfirend wants to come. Don't want her to come, depending on the diagnoses. And, well, I take Cialis (generic now). Don't want he to know I juice!

Any tips?

And rick roll, and I love poker I am serious about this.

I was at Big Staxx Friday.

Holding my eye and taking my time to see my cards. Kind of shaking before I saw them.

Table over was the guy asking if anyone knew Antonio Brown. Apparently, if Antonio Brown played one game in a Raiders uniform he some how would make 10k. He wanted to go meet Antonio Brown and beat him up.

Wanted to get moved, and say, YES, ANTONIO BROWN IS MY NEIGHBOR, NICEST GUY IN THE WORLD. What you going to do about it?

But the eye holding and shaking were real. Kind of in bad shape. Not horrible shape. Think I am going to get better real fast when I see the doctor. And was told no need to hurry it. The room was real dark. Asked over and over again what the bet was. Really wasn't sure. Couldn't quite tell the difference in the color of the chips.

I mean, I play in the same room as James Brady. He is a spewtard. Way better results than me. I should stop my crying.