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Pulling teeth for support

Ok. So where do I start?

I was diagnosed 8 years ago after a 6th nerve palsy in that left my left eye unable to turn all the way to the left landed me in the hospital the day after thanksgiving. The ophthalmologist on staff ordered the MRI that got me admitted, and a few days later the spinal tap confirmed it. They put me on a course of steroids, and sent me on my way with a diagnosis and a few brochures. “Pick a medication and find a neurologist”, they said, offering no additional help. I was 23.

I spent the next 6 months pretending that it hadn’t happened. My family and friends knew, of course, but I avoided finding a neurologist or looking into medication options. My eye resolved, and I was fine. 6 months later I had my second attack- this time I lost some strength in my right leg the left me limping slightly and a little unsure on my feet. The flare-up didn’t last long, but by the end of it I had found a neurologist. As the leg issue resolved, I lost a small amount of vision in my left eye (my neurologist laughed at me- my vision went from a 20/15 to 20/20). They put me on my second round of steroids at this point and started me on Avonex.

I experienced some of the flu-like symptoms following my shot in the beginning, but pretty quickly everything adjusted and I was totally fine. My vision came back soon after, and for the next 7 years I was completely relapse free. During this time I moved to Chicago, sold my car, was promoted at one job, went through a rough breakup, changed jobs, and went back to school. I maintained my bi-yearly neurology checkups, and had intermittent MRIs.

Once, about a year ago and a half ago, my MRI came back with new lesion activity. There were no clear symptoms associated with the activity, so my neurologist an I opted to stay the Avonex course and recheck the MRI again in 6 months. 6 months later the MRI was quiet, so we didn’t change anything.

About 3 weeks ago I started experiencing some numbness in my feet. Through the next few days the numbness spread up my legs, over my stomach and back and in my fingertips. We did another MRI that showed 4-5 new lesions, and my neurologist recommended a change in medication. Interferons, she said, were likely no longer working. She recommended I consider Tysabri, Gilenya, or Tecfidera, and ordered the JC antibody test.

And again, despite my being an active patient with a neurologist at Northwestern Memorial Hospital, I was left alone to decide. I’ve attempted to reach out to MS support groups online (through NMSS), as well as in person, and all I’ve gotten were crickets. My neurologist’s office, I’m sure, is sick of hearing from me by now.

So. Here I am, unsure what direction to move it. I’ve been relapse free for so long that Tysabri seems like an aggressive recommendation. Does my neurologist see something on my MRI that hints at a changing of the tide?

It’s the unknown of the disease that’s rough. No one knows anything, or can tell you anything, and no one knows if anything works.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Amy B Mel
    5 years ago

    Hi Chrissy,
    I read your story and though it is your own story it is a path that many of us can relate to. I hope the new Dr. has helped you reach a decision you are comfortable with. Like Nick, the last few sentences stood out to me too. We have to remember that so much is unknown, but doing treatments is a sensible choice. The disease modifying drugs help keep things in check, or progression to a crawl, as Laura so nicely put… progression happens at an unknown rate, we’re all different… stay strong, you’re not alone. Amy

  • Nick
    5 years ago

    I wish I didn’t understand and have such experience with your last comment. “It’s the unknown of the disease that’s rough. No one knows anything, or can tell you anything, and no one knows if anything works.” That is so true. I lost the vision in my left eye a few years ago and it does vary from only seeing fuzz to good days when I can make out blobs it has not been good for a long while now. No one can seem to tell me if switching drugs might help or if it will ever get better, they tell me it might get better sometime but then again might not. It is frustrating to never know what is next or what will work. Good luck with the new doc. I am starting that process again after a few bad experiences. Hopefully I can find a MS specialist that will be able to make a difference then maybe I won’t feel like I need a nap all the time and who knows maybe a miracle and I could actually see right again.

  • Laura Kolaczkowski
    5 years ago

    Good luck with the new doc and don’t forget you are the center of your medical team. If you don’t like this one, it is perfectly fine to move on to the next and even the next and more until you find the right one for you. Remember you aren’t married to these docs -you are just dating and it’s ok to break up for someone better. best, Laura

  • Laura Kolaczkowski
    5 years ago

    Chrissy, there is so much to respond to in what you have written – I hope this will all make sense. First, I am so sorry you have been diagnosed with MS – especially at such a young age. It is inexcusable that a hospital would treat you for a relapse and not do any followup with you on discharge to make sure you had found a neurologist for follow-on care. I hope with all the changes in our health care reporting and reimbursement system, that doesn’t happen these days.

    Avonex is a good drug, but only one of about ten disease modifying therapies we have available as an option. We know each of us responds differently to these drugs and having options is great. As you have found out – it is very possible to not show changes on your MRI but still have changes in symptoms. The MRI imaging only shows the white matter activity and they now know there is also MS stuff going on in the gray matter which we can’t see. Even when we think our MS is quiet and doing nothing, its pretty clear the disease never goes to sleep and stops progressing. The drugs are important to keep that progress to a crawl.

    I’m horribly disappointed for you that none of the agencies have responded in a way to give you support- connecting with others who also have MS is one of the best tools we have available. Only others with MS really understand the complexities of living with this disease. Well meaning friends and family will listen and try to tell you they understand, but its pretty impossible to know unless you live in this body what it feels like when the central nervous system goes bad.

    The patient support lines for the drug manufacturers are also pretty limited – there is only so much they are allowed to advise on when they talk to us. Most of what they can say is dictated by a script they must follow. To get bias free opinions and discussion, active patient forums are the way to go. Be sure you find one that is based on facts and not just opinions – there is a lot of misinformation out there.

    You say you’ve been relapse free for so long that going on Tysabri feels overly aggressive. You really aren’t relapse free with the recent symptoms you describe, are you? I am on Tysabri and need to share that I have also had experience with the manufacturer as a patient advocate in discussions and meetings about the plus and minuses of this drug. There are known risks to Tysabri, and each of us has to make an informed decision if the risk is worth the benefits. I continue to be JC Virus negative, so taking Tysabri is an easier decision for me. I am also 59 and past child-bearing years so I don’t have to consider pregnancy implications.

    I started originally on Copaxone when I was diagnosed and moved to Tysabri when I became less than compliant with those daily injections.

    Good luck with this next step – I hope you find a good support group, I’ll look for you back here , and I please get your doctor to review all of your options with you rather than just handing you a variety of brochures.

    You really are not alone in this – Laura

  • Chrissy author
    5 years ago

    Hi Laura-

    Thank you so much for your kind words, they really mean a lot to me. My friends and family have been very supportive through all of this, but it can only be limited, and I think having a support group of people with MS would be helpful in navigating everything.

    I have an appointment scheduled with a new neurologist for this Tuesday- he is very highly rated, and I’m hoping the switch will be a good one, considering my recent experiences with my current doctor. My JC antibody test came back positive, so at the moment I’ve taken Tysabri off the table and I think Gilenya will end up being what I switch to, depending on the new doctors recommendations.

    Its definitely very tough trying to keep the MS at the forefront of my mind, when my day to day has been largely unaffected for the past 6 years. This recent flare-up has made me feel foolish for every expecting to sail through this disease easily. I was/am extremely happy to have found this website- I think it will be good to have people to bounce ideas off of.

    Anyway, I wanted to say thanks for your reply- I’m not a terribly sentimental person, but I’ve been feeling alone and despite logically knowing I’m not, its nice to have that connection and proof.

    -Chrissy

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