At the request of a couple of members, here's my story...
My not-so-long journey started in 2003 with the onset of Optic Neuritis. I had never really had any other serious medical problems, and this came on kind of gradually. I experienced some pretty severe pain at first, and I thought I was having a bad sinusitis episode, but I started to notice some blurring, and there was a definite difference in color between the two eyes. I went to the emergency room because it was the weekend and was seen by an ophthalmologist at that time who referred me to a neuro-ophthalmologist(N-O). He told me he had an idea what I was experiencing - ON, possibly MS, but see the N-O first.
In order to see this much revered expert, I had to first visit my PCP which at that time was like pulling teeth. I had to actually go to the ophtho I saw in the ER and have him call my PCP to explain how urgent this was. He had done some research after he saw me and discovered the Optic Neuritis Treatment Trials which talked about the benefits of receiving the IV Solu-medrol at the first signs of ON in order to stave off further attacks and possibly delay the onset of MS. Amazingly, my PCP decided (without seeing me) that it wasn't ON or MS, and that it would pass. The ophtho was so horrified that he called a colleague in town to see if he would see me. He did that day, and video conferenced with a N-O who diagnosed it as ON and ordered various tests in addition to the IV Solu-medrol. He insisted I get a new PCP, and 3 weeks later I had one as well as referrals to actually SEE the N-O and a neurologist.
Five weeks post attack: Completed tests (MRI, LP, EVP, and blood work). Diagnosis: nothing. Nothing on the MRI, normal LP, abnormal EVP, and elevated ANA. The neuro didn't think it was neurological but more auto-immune (Lupus or something) so I saw the rheumatologist who scowled at me the entire time for wasting her time since my problem was obviously neurological.
At that time, I started surfing the web through my husband. We quickly discovered the hornet's nest that I had been so viciously pushed into. I was disheartened by all of the people that had similar problems with no relief. Frustration was the norm, and having already experienced that, my hope was quickly fading. I was lucky enough to have wonderful family support, and I just sort of muddled through the next 5 months until I regained enough vision to function (read, drive, etc.). I had no more problems, and I was so thankful...and in complete denial. I had deleted any trace of the previous 6 months of my life. I was eating better and exercising, doing whatever I could to avoid whatever might happen.
That lasted for about 15 months or so before it hit again in my left eye initially which was a little easier to handle because I don't 'use' that eye. But, a couple of days later the right eye started to hurt. I had already seen my PCP and had an appointment to see my N-O, but called when my right eye started to ache. Off to the ER again. Results were the same: Normal MRI and LP,
I still had an elevated ANA, a relative afferent pupillary defect and the EVP was worse than the previous one. In addition, the head of the optic nerve on the left eye was very pale compared to the right. At that point, my N-O went to bat for me because he didn't want me to loose anymore vision.They decided on methotrexate, but the required pregnancy test turned up positive. So, now I'm pregnant with my fourth child which we were trying for AND I have this 'thing' that they want to treat with a drug that's not really good for baby. After much debate, we opted for the steroids and decided to wait until the second trimester to start anything else. The neurologist and the obstetrician both said that 'things' like this can get better with pregnancy, and I may not have any issues to deal with until after the birth. I did wind up starting the methotrexate about 5 months into the pregnancy due to other neuro symptoms and continued that until about a month before the delivery. The birth went fine, and my vision was gradually getting better in the right eye, but my left eye never improved.
I didn't have anymore problems for about a year after the birth. The ON fairy struck again in my right eye, and this time, my vision was pretty much non-existent. I made the calls, saw the doctors, got the medicine, and did the tests. I was actually at peace with the situation (at least on the surface), but this time, the MRI was positive. It even showed the previous lesion at the optic chiasm which explained the bilateral ON. I started Rebif but after 3 months was still having flare-ups (balance issues and incontinence)
At this time, my N-O had a serious talk with me about my future. He encouraged me to start low-vision training, and provided me with the needed documents to apply for visual rehabilitation with the state. He said "If you do it now, you'll be able to function independently until your vision comes back. And if it doesn't or if this happens again, you'll be equipped to handle whatever you need to handle. Think of it as an insurance policy - just in case." He was absolutely right. I had orientation and mobility training, took braille classes, learned how to use adaptive aids, and even learned how to get around in the kitchen. In addition, I received equipment that allowed me to continue to work.
During this, I continued to do research, and had tried to get into the study at SUNY that used high-dose chemotherapy to wipe out the WBCs in your body. It had shown such dramatic results with lesions actually disappearing. However, it would have involved actually living in NY for a while during the treatment which I wasn't willing to do at that point. My choices were Novantrone or Tysabri. I chose the Novantrone, and was pleasantly surprised. I experienced very few side effects, and it seemed to stop it dead in its tracks. I didn't have any problems during the 6 treatments, and I felt so good. The vision in my right eye had improved enough for me to drive, and I was on top of the world. I saw my neuro just before the last treatment and had an MRI. It actually improved!! I was so excited.I was in remission.
Unfortunately, I had another attack of the ON just 3 weeks ago. Steroids again. The pain is gone but so is the vision. I broke out the cane and parked my motorcycle. I'm waiting for the referral for another MRI. I've been surfing the web thanks to my ZoomText software trying to find some sort of connection I think. There's still so much to learn - like the feeling I've had the past week around my torso. I just thought it was from using the cane or whatever. It never occurred to me that it could be related to the MS. It's referred to as the MS hug, and it's quite uncomfortable even as we speak.
I felt compelled to reply to some people especially regarding the ON and the effects especially with regards to waiting to start DMDs. If I knew then what I know now, I would have been a little more aggressive. I hope this answers some of your questions. I'm looking forward to learning more from everyone here.