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Avatar universal

My Story

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.

TC
6 Responses
233622 tn?1279338505
Thanks so much for taking the time to post this.  

I started my first bout of ON last May.  Had an MRI that showed the ON and a possible demyelenation lesion in the frontal lobe of the white matter of my brain.  I saw two different neuros who could not agree what that bright area in my white matter really was. My test results were very simular to yours. SSER,BAER, VER.......

My PCP wanted me to go to the MS clinic but my insurance would not cover.  So, I waited.  Then in January of this year I started ON again. Had another MRI that confirmed another bout of ON.

I was strongly incouraged by the eye doctors and my PCP to get to the Ms clinic.  This time I had insurance to cover.  I took all of the tests and films I had to the MS clinic.

The MS doctor came in after looking through my medical tests and told me she was starting me on Avonex for MS BEFORE she even did my neuro exam. She was 99% sure before the exam.  

She was 100% sure of MS after the exam.  That was about 4 weeks ago.  I think I am finally settling into the fact that I have MS.  But I am still in a bit of denial I guess.  Your post is reassuring me that I am doing the right thing by taking the Avonex every week.  

LA
Avatar universal
Thanks for posting this. I know it will help many others here.

ess
195469 tn?1388326488
I am so glad you posted your story.  What a terrible time you have had.

Are you experiencing other symptoms and if you don't mind, could you tell us what they are?  Are you Neurological phsyical exams abnormal?  There has to be more information to put together a clear picture.  I am sure that you have expereinced more than the Optic Neuritis.

I just can't imagine having these many bouts of O.N.  You have endured enough, I would say.  I hope we will be able to help you, if you desire our thoughts on this.

Best Wishes and hope to hear more from you,
Heather
335728 tn?1331418012
Thank you so much Chris for writing down your story...I know it was a lot of work and it seems every time we tell our stories it gets to be more and more like a strenuous workout for our brains and bodies.  We sincerely appreciate you sharing with us!

I am one of those as I mentioned before that is being denied the DMD's even though my MRI is positive for numerous lesions and my LP was positive for Oligloconal banding.  I have been seen by two MS Specialists numerous times and neither seems to feel that I have had a relapse so I am unsure what I should do.  I am at the point where I feel like I should just wait and see what happens but WOW...then I read about what has happened to you and it is really hard to get a good sleep at night and realistically...what else can I think about?

I hope that you will stay in our forum and join in on the comaraderie we have here...I imagine that you have your hands full with 4 children but when you do get a chance, please stay in touch.  Thank you again for all your work and I am sure your story will be bumped up for many newbies to see!

Lots of Hugs,

Rena
387113 tn?1313515683
Wow! Thank you for your story.  I've had ON and what I'm sure was a flare up again early december but my MRI and LP were negative so my neuro said "just go on with life."  Needless to say it's been 6-7 mo since the ON and I've developed tons of sx's but "It's not MS" is what the Neuro said so, why bother goign to the dr when their not going to help you, has been by feelings.  I did request to see the MS specialist but feel it's probly going to be more of a "foot in the door" than anything else.  Thank you for your story becuase it is encouraging to me to just hang in there. Thank you!
cz
Avatar universal
Heather,

No, there have been other things, but I tend to concentrate on the ON because that's the one thing that's stuck around.  

A nice little side effect of the ON is Uhthoff's Phenomenon, and when it gets hot my eyesight decreases.  This could be because of the weather or from exercise.  I've never experienced it because of a shower or bath, but I don't get to stay in very long.

I've had problems with balance - specifically veering or falling to one side.  There was a time when if I closed my eyes, I'd fall over, but that hasn't happened for a while.  I also had this 'head bob' thing going on for a while.  That was fun.

I'm currently experiencing the MS Hug which is more annoying than anything, but I've also been having spasticity of my abdominal muscles.  I had another MRI and saw my neurologist today, and I have to do another 3-day course of the Solu-Medrol followed by oral prednisone.  Fun times!  He said this should take care of the Hug and spasms, but I need to have a spinal MRI which I've never had.  

My neuro exams mostly focus on the eyes, balance, and gait.  It all depends on if I'm having a flare-up or not.

I haven't experienced much in the way of limb problems or muscle weakness.  I've been very lucky in that respect.  I had very good results from the Novantrone with the white matter lesions but not with the optic nerves.

Other than the vision, my biggest complaint is fatigue.  At times it's so overwhelming I can't move.  During those times, I can take Concerta which helps so much, but I don't like to take it unless I absolutely have to. When I'm that tired, my brain doesn't work too well, but I don't think it's a separate issue - just a side effect of the fatigue.

I was attack free for a long time until I had the flu in December.  I also had secondary infections (pneumonia and bronchitis).  My neuro said it's possible that the infections triggered this latest round of attacks, but there's no way to know.  

You asked for more and ya' got it.  Thanks for the help.

TC
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