Just Diagnosed...and the journey begins

Hello everyone. I am so glad to have found this site. I read the posts here almost everyday, and they have been a lifeline to me. Today I received confirmation that I indeed have MS. My first symptoms started September 15, 2016, with my lower left leg going numb, but also having the feeling like thousands of needles prickling my leg. The symptoms lasted about 2 weeks and gradually faded by the end of week 3. My MRI's of the brain and lumbar showed several lesions on the brain and one in the spinal region. When I think back on episodes of numbness in my fingers, and other unexplained health issues, I believe I have had this disease at least 10 years. Except for an occasional light tingling sensation in my hands and face, I feel pretty good. My doctor wants me to begin taking Aubagio. I was given an information packet about the drug, but wanted to hear from those who are, or have taken it.

21 Replies

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  • Welcome and thank you for the post. Glad you've done some reading here, everyone is so nice. I'm Lynn, I just went numb at the end of June. Was given tentative diagnosis of MS in August. Since then I have undergone many tests including MRIs spinal tap nerve conduction lots of bloodwork. Will get all the results next Monday and a definitive diagnosis. Will report all those results the next day or so after.

  • Hope you find the answers you need. It's no fun playing the waiting game. And although I never saw this coming, I'm glad to know the reason for all the unexplained health issues for all these years. I'm hopeful that the Aubagio helps to slow down the progression of this disease with minimal side effects. I wish you the best.

  • Thank you! Will post results Wishing great things for you with the walking device. Amazing , you are beginning your day and I'm just going to bed. 10:00pm Monday here in California. Have a great day!😊

  • Hi Lynn, still praying you get the answers you want on Monday. I go today to see about the Pace walking system similar to the bioness. I will let you know how it goes. Keep crocheting, blessings Jimeka

  • jimeka please let us know how the PACE works out. Fingers crossed for u that it helps!

  • Good Luck Lynn!

  • Hi Npraise, welcome, I wish it was under different circumstances and also at a better time of year. I hope you experience as much good help and information from this site as I have. I have PPMS, and I have never had any medication, so I can't help you but there are plenty out there who will know about Aubagio, hope you get the help you need, blessings Jimeka

  • Hi N2Praise

    I started taking Aubagio in Sept. I am such a chicken when taking medicine I waited 6 months before I started the pill . The dr pulled me off the pill due to a rash in the palm of My hand twice. He thinks I should try it again and I will soon. I like that the pill is small and didn't really have many side effects except for the rash and I didn't think that was too bad. It was only the size o a quarter. I get the results of my MRI at end of month so I hope it was working. Good luck to you.

    Jenny

  • Hi jkdavid99. Thanks for your response. I certainly hope the results of your MRI are good.

  • Hi N2Praise so glad you found us ☺ l am sorry about your dx tho, no one wants to be part of this club.

    I have never taken aubagio, my neurologist put me on copaxon and so far so good with that. I do know that others have had different results with it ☺

    Glad you're here! The more the merrier!😊

    Jes💞

  • Welcome, N2Praise.

    I'm sorry about your diagnosis. No one wants this disease.

    I haven't taken Aubagio, so I can't speak to anything about it. However, I think most of us have been concerned about site effects of our drugs at one time or another. I know I have been, but I've also found that some of those sides effects go away after time. Be sure to talk with your doctor about any concerns you have. Also, all of the drug manufacturers have help lines, as do pharmacies if you have questions.

    I'm currently on Gilenya and it's working well for me.

  • Welcome! I wish I could tell you something about your DMT, but I won't begin treatment until January with copaxone.

    I hope you will get more answers soon. Keep us posted about your progress.

    Erin

  • Welcome! I am also on Copaxone. Maybe you should research all the drugs before you decide. My neuro insisted that I do that before I selected a drug. I did recently go to a luncheon out on by the maker of Aubagio and it would be my choice after copaxone. I worry a little about the hair loss w Aubagio. Like copaxone, aubagio does not have the risk of pml (deadly brain infection) that many other medications have.

    FYI, copaxone is the only MS med that does not affect your liver.

  • Thank you, Karen. I will definitely do my research. At first I was adamant about not taking anything at all, but my MS specialist thinks that would be a dangerous thing to do. I'm worried about side effects, of course. As I'm sure we all are, but I would also prefer something that has been around for awhile with proven results.

  • N2Praise, hello and here's an official welcome to this fabulous chat room put on by the MSAA. You're chatting with Fancy1959. I'm glad you've been following along then you understand what a safe and kind and uplifting chat room this is. As much as I love talking to you via this chat room I am not happy to have to welcome you to the world of MS. You will find that no two peoples path down the winding road that MS leads us is exactly alike.

    I too believed that I had MS I'm good 10 to 15 years before I was diagnosed. Looking back on the little episodes that I blamed on growing older, I blamed on working too hard, I blamed on the new stress in my life, but what i was really covering up what I was becoming ill with MS. It was never even a consideration in my mind that I could have some type of such a serious disorder. Nobody i knew had MS. Nobody in my family has MS. So then why could I possibly have it? Only God knows. But I did have it. When it knocked me down flat on my back for over a week and basically took my right arm away as a useful appendage, I realized something was seriously wrong with my health.

    I do not take Aubagio, so I cannot help you with any information on that therapy. I am currently on to Tysabri and have always tolerated it well.

    Please remember that we are just a post away. We have broad shoulders and we've used them countless times for people to vent their anger on or their insecurities on. We can compare our trecks with yours and sometimes In the comparison or in the failures and in his success as we can provide you with informationb that will give you some insight on this journey we take with MS. Finally I would like you to remember that together we are stronger. I'd also like to invite you to become our newest MS Warrior. As an MS Warrior we never give up and we never give him we simply fight on! So to you I say fight on MS Warrior, fight on!

  • Thank you, Fancy1959. I feel as though I have a new family!

  • N2Praise Welcome to the group. My name is Judi. This is an exceptional group of people here. All have been very supportive, offfering words of wisdom and sharing some laughs. I know you're going to like it here.😊

  • Welcome N2Praise. Like you, I am new to the group, and also in the process of orienting myself to the confusing world of MS medications.

    You are also, like me, probably realizing what an fantastic group of individuals, and what an invaluable resource of information and support, this community has to offer. You have already met some of the really great folks here (and you'll soon realize that they are not just around to staff the welcome wagon, and then disappear).

    In addition to asking questions (which are always met with remarkable helpfulness), I have also found the toolbar's "Search My MSAA Community" function to be a gold mine of information. I did a quick search on Aubagio, and it appears that this search function may prove just as helpful for you, as it has for me.

    I like your screen name, by the way ;)

    Christopher

  • Hello, GasLight. Welcome! I don't post often and sometimes I'm not able to read but once or twice a week. Thanks for the tip on using the search function, which I did soon after my post. I also did google searches, not just for Aubagio, but other MS medications as well. I did not like what I found. Some of the side effects really frightened me. So, after some serious consideration, and most of all prayer, I have decided to forego taking any treatments other than the one capsule a day of 100 mg Gabapentin, that I've been taking regularly for about a month now. I truly believe I can control the progression of my MS symptoms with the foods that I eat. I adjusted my way of eating about 5 years ago because I would have such terrible side effects from certain foods that I ate, such as sugar, red meats, poultry, dairy, etc. I became a vegetarian and started feeling pretty good. Well, about 5 months ago, I started eating some high fat and fried foods. Now I can't say for sure, but I think eating these foods triggered my first serious MS symptoms. I am now eating a low-fat vegetarian diet, I feel great, and feeling good about my decision.

  • Welcome N2Praise. I'm Dawn, but my grandkids call me Tutu (Hawaiian for gramma). I don't think we've met yet. I believe I was away and offline when you first posted. So I'm late to the party again...

    It sounds as though you've done your research and made up your mind about DMTs, so I won't chime in on that. I'm sure your neuro will want to further discuss that with you. 😉

    I am happy to hear you feel well now, and pray you continue to do so.

    We're all only a type (or is it called a text today?) away! Hope to get to know you better!

  • Hi Tutu. Thanks for the welcome. I've only posted a couple times here, as I don't get a chance to read and post as much as I'd like. Life is full with work, church, and family. My neuro was not happy about my decision to go this route when I told him. However, I will be finding a new PCP and neuro since I have changed my healthcare insurance for 2017. I hope to get to know you and others better as well. Be talking to you soon!

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