Hello!

Hello!

I've been following this forum for a while. This is my story so far: Diagnosed 2012, never told what type MS. Had severe fatigue, numbness and tingling in arms and legs, MS hug, Lhermitte's sign & weight loss (that was nice😊). MRI showed cervical and thoracic lesions, positive LP & failed VERS test. Neuro sent me to MS specialist for confirmation as he never had a patient without brain lesions. She said I had Spinal MS. Neuro started me on Copaxone. Felt progressively better 2013 & had no new lesions or obvious relapses. 2014 - 1 brain lesions, 2015 - another brain lesion. All the while, for 2 yrs Neuro not concerned. I did have PT after complaining of hip and leg pain/stiffness & generally"felt like crap". Found out I had labral hip tears and gluteal tear from falls. I tend to fall up stairs and trip over nothing. Lol. Also started seeing Chiropractor and again slowly started feeling better. Of course, by 2016 had put the 50 pounds I had lost back on which was a big bummer! Then late 2016, for 2 months I had what I term whole body, central vibrations that never went away, constantly aware unless asleep and sleep was and has been an issue. Yes, I tend to wait a while before I see a doctor. But this was literally driving me crazy! I went to Neuro and asked for something for anxiety. He said he could refer me to a psychiatrist, then added that "in ten yrs they'll probably figure out that what you have isn't even MS, but something else." My husband was present for this visit and said, " you need to see someone else." So, back to MS specialist 1 1/2 - 2 hrs away, but worth it, who immediately said I should have been put on a stronger DMT to start with since my lesions were initially all spinal. 2016 MRI showed now 3-5 brain lesions. Had hysterectomy in Dec 2016. Once cleared by GYN, started Gilenya Jan 31. Unfortunately, my liver does not like this medication and had to stop it last week after my levels continued to rise after decreasing med to every other day. Neuro is out on medical leave and will be seeing NP tomorrow. Other than monitoring labs, not sure what the next step will be. My big concern is what DMT they will want to try. Seems like almost all of them have potential for liver enzyme elevation. Sorry for the long post. Has anyone else had med issues?

12 Replies

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  • Hi -BB- I will just say hi and welcome!😊 And from the sounds of it, thank goodness you found a new Neurologists! Kudos to your husband!

    I'm only on Copaxon and brain lesions, so can't help you any but l know there are some that can.

    Welcome again!🌷

    Jes 🌠

    ps. Don't forget about the birthday club with jimeka

  • Hi -BB- I will just say hi and welcome!😊 And from the sounds of it, thank goodness you found a new Neurologists! Kudos to your husband!

    I'm only on Copaxon and brain lesions, so can't help you any but l know there are some that can.

    Welcome again!🌷

    Jes 🌠

    ps. Don't forget about the birthday club with jimeka

  • Hi -BB- , welcome to the group! Sorry for all the stress that your MS, and the doctors, are causing you.

  • Your story seems somewhat familiar to mine. I have mainly spinal lesions with 5 small brain lesions that have developed recently. I've been tested for NMO (negative) and have had 2 lumbar punctures done😳. LP and MRIs support MS diagnosis but new neurologist not familiar with my history always question diagnosis b/c of the lack of brain lesions. I've been on Copaxone and Tecfidera but continued to have many relapses. The neurologist treating my Trigeminal Neuralgia talked me into trying Tysabri. I'm doing much better and no longer need Amypra for walking. I don't know how Tysabri effects the liver. Hope my story helps! Good Luck!!

  • Thank you for replying. I was also checked for. NMO three times and always negative. I really like the Neuro I see now. She is very approachable and understanding. It looks like Tysabri also has liver warnings. I am anxiously awaiting to hear what they recommend now.

  • Welcome -BB- . We're happy you found us, but sorry you have MS. It sounds like you've been through the wringer. I'm happy you found a good doctor. I'm sorry I can't help with your DMT question, but I know many here can share their experiences with you. Do you take gabapentin for the vibration sensations? That minimizes mine. I'd go crazy if not for the gabapentin. As for falling upstairs, has your doctor checked you for foot drop? I wear an AFO which helps me lift my right foot and prevents me from clipping steps, curbs, etc. I have far fewer falls now because of that. Extending you a warm welcome from all of us here at MSAA. 💕

  • BB, it's Fancy1959. I sent you a welcome message under the birthday wish you sent me. Welcome aboard and you are now part of our extended family! And as I stated earlier always remember together we are stronger!

  • Tutu & Fancy 1959, thank you for your replies. I do take Gabapentin and Baclofen at night and can't sleep at all without them. The all body vibrations ended a little after 2 mo. I have had numbness and tingling since the beginning that has never left but its severity changes with activity. This I have learned to live with. I am still working four days a week and as we all know some days are better than others. I only take the Gabapentin and Baclofen on the bad days, so I don't get too sleepy.

    Again, thank you all for replying. It is good to have people who know what you are going through.

  • -BB-,

    I'd say you're a wonder! Working 4 days a week? Wow! That's great! I pray you have some answers from your next visit and choose the DMT that's best for you.

    This site has been a huge blessing to me, and I hope you find the support and help you need. We don't always have answers, but it feels so good to know we aren't alone.

    Please keep us updated about your progress.

  • Thank you, greaterexp. I'm definitely not a wonder, I'm just stubborn!! Come from a long line of stubbornness. I will definitely keep everyone updated. I feel I needed to reach out to others for my own needs at this time. Admittedly, I am my own worst enemy. Thanks, again. 😊

  • Hi BB, I hope your doc can find the right drug for your needs. Good you are still working part time. Me too. But remember stress is bad so take good care of yourself.

  • Hello, -BB- and welcome.

    I hope you're able to find a DMT that works for you, without serious side effects.

    Eleyne

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