Just 3 Months.
That’s all it took for me to be “officially” diagnosed with RRMS.
To be fair, I did go to my Neurologist even earlier than that and was given the tentative diagnosis based on my MRI results even earlier than that. But because my case was so different, it took a Brain Biopsy for them to be really sure. They didn’t tell me at the time, but they thought maybe the lesion behind my left eye was cancer. I am so glad they didn’t tell me what they thought. It all started in November, 2012, right before Thanksgiving. For months before that I had been having declining vision and had been noticing also a problem with distinguishing colors (such as the color of the traffic lights). I just thought I needed a new RX for glasses since it had been nearly 3 years and mine was, after all, expired. But I was not prepared for what happened when I woke up the morning of November 24th. I had a lot of errands ro run that day but right away I noticed a horrible headache on the left side of my head, behind my eye. It felt as though my eye would pop out at any minute. It also hurt to move my eyes, such as looking behind me while backing up in the car. I also noticed that everything had a shadow to it. Like, I could look at you and then to the left of you was an outline of you. While driving I noticed that I was seeing things I shouldn’t be seeing in the windshield, such as the trees passing by. It was very distracting and looking back I should have stopped driving that day but I still was able to see enough to safely drive in my opinion, and I had so much to do! My wife, (I am a married lesbian) has been disabled for a few years now from Agoraphobia and I am the main one who must go to the store, run errands, etc. So if I don’t do it, it doesn’t get done. She does not drive and cannot go into a public place with strangers. Anyway, so later that day I saw my Mom and told her what I was experiencing. She did drive me to some of the other places I needed to be. She did not say anything about my appearance though. When I got home, my wife took just one look at me and said “You are crosseyed!” My left eye was turned inward and that’s the reason I was not seeing right. I took a photo of myself on that day and everything. That’s the only way I could see it! I became scared when I looked at the photo on my camera. I thought for sure now I had waited too long to get my new glasses and there was damage now. I had no idea if this was permanent or not!
On the 27th, I went to the eye doctor. He said he thought that I had “Thrown a clot” behind my left eye. Basically that I’d had a stroke. I was also diagnosed as being color blind. The stroke was easy to believe even at my age (31 then) because they run in my family and my Mom had had one in her late 40’s. I promised my family that I would go to the hospital in a few days, and on the 29th I was seen in the ER. They did a CAT scan and said that they were admitting me because there were “troubling spots” on it. I was scheduled for an MRI the next morning. The results of that were a little troubling. I was told I’d had not one stroke, but two, one on either side of my brain. I stayed in the hospital for 6 days and eventually thank goodness my sight returned but was still not as good as it had been.
Around this time it was thought by the Opthamologist that I could have MS but I was told that just doing another MRI would not work because of the damage that would still be present from the strokes. So I was sent home with a “post stroke” order to eat better, take my meds, which included cholesterol med and a daily aspirin now along with my normal BP med I had been on. But the headache just was not getting better. Then, on December 13th, my wife and I were testing me for stroke symptoms and found that I could not “high five” her with my left side, and I was also failing in other areas. So, back to the hospital I went. And of course, again, they kept me. This time the MRI showed images much clearer, and they were worried I had a tumor behind my left eye. MS was a constant choice, and I had a spinal tap during this visit as well. When the MRI results came back from the 3rd MRI, the differences were astounding. I had 3 areas of interest in my brain, and they were now seriously considering MS but still toying around with it being a tumor behind my left eye. Meanwhile I had a headache pretty much 24/7 behind that eye, and life was on somewhat of a holding pattern. It was a very difficult time. Surgery was mentioned, and when I heard that Neurologists usually do not want to jump to surgery very easily, I figured they had given it much thought, and I was open to it from the beginning. No matter what, I just wanted to KNOW what was wrong with me!
Some time passed, and we waited for several test results to come back. I was informed that my spinal tap was partly positive for MS, and that coupled with the MRI caused my Neurologist to go ahead and start me on my DMD, Copaxone. I did not have insurance so at the time we did have to wait so that I could get financial help with it. During that time I developed several new symptoms and one day I called my Neuro just to let her know and she ended up calling me back and saying they were going to go ahead and schedule me for a Brain Biopsy on Jan. 22nd. My Neuro had been looking at my MRI results and stated he was not comfortable calling this MS when it looked to him like it could also be a tumor. They finally needed to know once and for all. So I went in for the biopsy, and they got some very good samples from the lesion behind my left eye, and I was officially told that they results were positive for MS in early Feb. 2013.
Since then I have started Copaxone as well as stopped it. I could not deal with the horrible injection site reactions which were so bad I dreaded each day and ended up saying I would rather be dead than continue. I was so depressed while taking the medication I could not bear to face it any longer. Since then I have had no relapses, and I have not been on a DMD for quite some time now. I feel OK most days, but I do still struggle with migraines and get one nearly every month that requires some assistance from the ER and the steroid Decadron. I am currently on Topamax but these migraines are too big for that to handle. Otherwise, I am doing OK.
I have never had mobility problems, only cognitive. I was approved for Disability in May and things have gotten a lot better after that. The MS has caused my memory to be nonexistant, and my IQ has dropped from 120 down to 90. I still struggle with anger and have “meltdowns” when I am out in public, like shopping and go too long without resting. Even though I have not had mobility problems I still find it is necessary to use a scooter at the store due to my back that still hurts from the spinal tap and I get very tired after only 15 minutes or so. I get out of breath very easily too. I have a tremor in my hands/fingers, swallowing issues, breathing difficulty, and am still legally blind in my left eye. Then there is the cognitive issues as well. Emotional problems, depression, anxiety, are common in my world. I think I am also developing the urinary problems many people have with MS as well. I could write a long list of symptoms, but I won’t bore you. I just wanted to get my story out and maybe help someone else who may have had a similar experience. Thank you for reading my story! 🙂
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