My story

Good morning, I was diagnosed with MS in 2008. In 2007, I had a sharp pain behind my right eye, and within 30 minutes, the right side of my face went numb and began vomiting uncontrollably. My husband took me to the ER and they told me I was having a migraine and sent me back home. Two days later, it had affected the whole right side of my body, was still vomiting, and very confused. We went back to ER, where they ran more tests, lumbar puncture, MRI, ct scans and more. We spent 19 days in the hospital. I was told at first it was spinal meningitis and encephalitis. Some of the doctors on the board said MS then, but I only had one lesion at the time. It took 10 months to gain the right side of my body back. So over the next year, several MRIs and lumbar punctures, another lesion finally appears and the neurologist says ok you have MS. Well I did the shots for a little while, but was in denial the whole time, still hanging on to the meningitis diagnosis. I took myself off the meds. A couple of years after, we had a beautiful little girl. Fast forward to this year, and I decided to get a second opinion, bc I've not been sick but I've had little things happening. But even those little things, I could always put the blame on something else. The headaches -stress, dropping things - have had carpal tunnel surgery on both hands, loss of balance - always have been clumsy, speech - well I'm just not a good talker. Anyways, I went to see a new neurologist and she spent two hours of her time with me explaining why she thought I did have it and me explaining to her why I didn't. Then she looked at my MRI and lumbar puncture records and even explained more to me. The one point she really made to me was that would I be able to take care of my beautiful little girl who now is 5 and so full of energy if I was to get sick as I did back in 2007 now.... well I've decided to try the pills. After reading the info, and all the side affects, I'm not sure which one to take. Any advice would be greatly appreciated, I go back to dr this week. Sorry for such long story, guess I'm accepting my diagnosis....

11 Replies

  • Hi. No need for apology. Denial is simply a part of the grief process. Sure to say we have all been through some form of it.

    When I recently switched to a new neuro, I grilled for all data and her overall patient experiences for the oral meds. I decided to stay on Tysabri... so I can't help in that regard. But I did want to let you know that getting all the care you need is so important for your family.

    Don't let fear or denial blockade that. It took many years for me to realize that I had MS... and so did my family

  • Thank you!!!

  • Welcome TLeannM. I was diagnosed in 2007 after many months of seeing many doctors. I'm not sure what medication your doctor is looking at. I was on Tecfidera for 2 years but it wasn't working for me. I just started Rituximan which is an IV medication. There are many medication options now. Good luck!

  • Thank you,

  • Hello TLeannM, l'm Fancy1959 and I would like to officially welcome you you to this wonderful chat room. You have no need to apologize to anyone, especially not your new friend's and family of this chat room. Many of us have similar stories and experiences to tell. MS is such a complex diseases that affects no two persons with the exact same symptoms. Is it any wonder that many doctors and even neurologist tend to use the MS label as a cover all for initially confusing neurologic symptoms. How can we not become confused, frustrated, and scared of the future. I, too, looking back had little warning signs that I kept finding excuses for: I was a bit clumsier than usual, but that was a normal part of aging, my bladder was giving me fits, but I had three sons natural, etc. Please ask your family doctor if you don't already have a neurologist for some referrals and get into see him or her ASAP. You have a precious daughter to think of now and the longer you let your MS run amuck and untethered over your nervous system, the more damage it can cause. I would like to welcome you to become our newest MS Warrior. Remember, we are stronger together. And as an MS Warrior we never give up and we never give in. We simply fight on as MS Warriors, fight on!

  • Thank you!!!

  • TLeannM


    Being diagnosed with MS was for me a relief, after so many wierd, mostly mild, symptoms. I'm not so thrilled with the diagnosis any more, but it does explain the symptoms. Tingling, loss of bladder control, shaky balance, uveitis and other eye problems, fatigue, etc. Fortunately still mild but annoying none-the-less.

    My son is grown, but he still expects me to do more than I feel capable of doing. Not sure if he's right and I'm lazy, but it is what it is.

    I take Aubagio and it has helped a lot. No relapses in the 18 months since I started. Significantly improved balance - I can walk without support, and improved coordination - I see it mostly in terms of being able to write. Side effect was losing a lot of hair - maybe half, but no bald spots. The hair loss stopped after about 8 - 10 months and it seems to be growing back, but otherwise the Aubagio seems to have helped a lot. B-12 seems to help the fatigue piece and Trospium for the bladder.

    Hope you are able to find something(s) that help you.

  • Thank you for the info!!

  • Hi Tleann, I have been diagnosed since 1996 and I think I pretty much have tried it all, Lol. I tried all the shots and now I'm taking Pills just because I wanted to try them. I have been taking Aubagio for the last year. Its a big change from injectables , Its great no sides affects , easy and painless. Since I've had MS I always say "I have MS but it dosn't have ME!.

  • Thank you. So you've had no side effects? After reading the literature they gave me, I got scared about all the side effects. I'm thinking about trying tifadera.

  • I was also worried but I have had none since day one.

You may also like...