Newly Diagnosed

Newly Diagnosed

Good morning,

My name is Shaena, I'm 32 years old and was recently diagnosed with MS. I've thought that I had this disease for quite some time but was too afraid to see a doctor to confirm it. My mother had MS, she passed away as a result of complications in March of 2010. I try not to think of my mom's MS as my own because I understand that all cases are different but I'm finding it a little difficult at times to separate the two. I just would like to build a relationship with others because I have no one who understands what I'm going through or have gone through as a result of this disease.

28 Replies

oldestnewest
  • Hello Shaena, welcome. Sorry to hear about your mother. They say that this disease is not heredity but like you I have came across numerous people who parents had MS. We're here when you need us. Keep in touch.

    Royjr

  • Thank you, I will! I feel welcome here and excited about the fact that everyone here has some understanding of what others are going through.

  • I am so sorry to hear about your mother. Please know that, like you said, everyone's MS is different. I have had it for 40 years and am still getting around on my own.

    Glad that you found us. We are all here for similar reasons, support, to ask questions and to sometimes just vent. We get funny sometimes and then we get serious. Jump in any time.

    Welcome to the group Taylorsmom !

  • Thank you! I feel so welcome already!!!!

  • Welcome! I'm sorry to hear about your mom and understand how hard it must be to not think the same will happen to you. I would have to guess that your mom had it before the disease modifying treatments? What treatment have you decided on, if any? What symptoms are you dealing with?

  • Thank you. My mom to my recollection was against the medicines being offered at that time. Only until she was nearing the end of her life did she take any prescribed medicines. I vaguely recall the Copaxone, steroid infusions, bee stings. I don't remember her having symptoms until it was too late for her. I was told by my neurologist that there are so many more medicines available right now than when my mom was dealing with it. I was just admitted into the hospital on the 17th for a 3 day steroid infusion (solu Medrol) and have been discharged with Prednisone for the next 12 days. I have an appointment on the 3rd with my neurologist to discuss Tecfidera. Right now, I'm having tingling and numbness in my left fingers and when I title my head down, it's like an electrical charge through my head, down my shoulders to my fingertips.

  • I had that same thing before I was diagnosed. It was the active lessons on my spine but after a four day treatment with steroids that went away. With MS being an inflammatory disease, the steroids helped the inflammation.

  • I was beginning to feel better, I was really excited about the steroid infusion. The feeling came back to my right hand and the charge from me titling my head had left but as of today, it has returned. I'm wondering should I contact my neurologist right away or just wait until my appointment on the 3rd of March.

  • I would because its over 7 days you have to wait until your next appointment.

  • Ok, I will contact my neurologist right away then. Thank you.

  • Welcome Dear, I am so sorry about your Mom! Even though we know that all MS cases are different, I am sure it would be difficult for anyone of us to not compare if we had a parent who had it. You are human, so do not be too hard on yourself. I joined in Dec and have started participating this month. This is a great place for you to be because no one understands what you are going though better than other MS patients. Become a advocate and director of your health. Research as much as possible, ask questions and make sure you have a Neurologist who shares your concerns and is willing to listen. You can network with others here. Know that you are never alone! On another note, I must say you are a beautiful young lady!

  • Thank you lexsarset !!! I agree, this is a great place and I feel so welcome just two days in. I'm working on researching more about my medicine that's been suggested for me by my neurologist to see if these scary side effects are common. I noticed that the people here are on a lot of different medicines but I haven't seen anyone discuss Tecfidera.

  • Tecfidera, easy to take easy to live with, I am pretty sure it works well, only 5 or so years on it, before needles (Yuck)for 13ish years. No Tec side effects, no worries, got a question, u know what to do. ASK.

    Have a good boring day Mate, Royce

  • Hi RoyceNewton ! Thank you for your post. It's crazy, a woman here said that she had all of the side effects and discontinued the medication and here you are doing well with it. I pray that I have positive results as well from this medicine. We shall see, soon. The body is so amazing to me.

  • do NOT work yourself up into side effects. I am sure they are starting you on the lower dose then moving up. U will have no problems, trust me beats the crap out of needles. U have experience with ms, just remember what your mums experience taught u, & be gentle with yourself.

    Royce

  • RoyceNewton Thank you, I will! Yes, needles suck, I just had 3 days full of them with my 3 day steroid infusion.

  • Welcom Taylorsmom Shaena

    I can imagine it must be very difficult to separate what's happening to you with what you experienced with your mom. We are here to support, listen and offer friendship. So glad you've joined us.

  • Hi erash ,

    I thank you for your support and I'm glad that I've joined as well! I look forward to hearing more about you all here, learning more about this disease, your experiences, suggestions, etc.

  • Hi Taylorsmom . So sorry to hear about your Mom. I know it must be scary to be facing this without her. We are here to listen and help. I welcome you with a big virtual hug!

  • Hi Iona60 ,

    Thank you! It is, when I found out and even to this day, I want to tell her but I can't. I appreciate the hug, I'm a real hugger! I'm so glad that I have all of you now, this group makes me so happy already and this is only my second day in, lol!

  • Taylorsmom, I already responded to another of your posts, but welcome! I'm so happy that you've found the people here to be helpful, informative, and supportive. I can come here with my worries and questions without overburdening my sweet husband.

    I am sorry about the loss of your mom. It must have been very difficult to have watched her disease progression. I am glad you recognize that everyone's course is unique, and that we now have options in treatments. You're obviously an intelligent, articulate young woman who can study the different options and be your own best advocate.

    You're in our prayers as you begin this new direction in life. (I call it my "new adventure.)

    Erin

  • Thank you!!!! greaterexp

    Yes, it was extremely difficult to watch my mom progress. I want to live so I have to live. I'm working on taking better care of myself, eating better, I just joined a gym, etc. I want to be completely healed of MS. I want us all to be completely healed from MS one day.

  • Amen! I'm trying to learn how to do my part while God does His!

  • Amen to that! greaterexp

  • @ Taylorsmom Hello and welcome to this group. I can certainly understand the feeling of comparing your MS with your mom's. But somewhere I read that MS is a "snowflake disease", that is no two cases are alike. You can keep that in mind when you think of your mom. Just take good care of yourself and hopefully your outcome will be very different. We have so many more treatments to choose from than she did.

  • Hi bavery207 ! I'm working on taking better care of myself, one day at a time. I've finally joined the gym at my apartment, I'm trying to eat better and just be in better spirits. I've heard that as well, about no two cases being the same.

    I love this group by the well! You all are awesome!

  • Hi Taylorsmom

    Welcome to this group. I saw that you lost your mom to MS in 2010. My mom died at the age of 63 so when I turned 63 I couldn't help but reflect and compare myself to her. I made it to 64 this year and I feel blessed to have the life I have.

    As for MS running in families, I have two sisters that also have MS and my 43 year old daughter is being assessed for it now. She has all the common symptoms. She's just waiting for her MRI and the appointment with the same neurologist that I have. As you probably know, MS is an auto immune disease and I also have auto immune hepatitis (since 1993). Rheumatoid Arthritis and Lupus are also auto immune diseases and are also prevalent in my family.

    I not meaning to be a pessimist by telling you this. I guess I'm just trying to say that I get the whole hereditary thing. And I think it's common for women to compare themselves to their mothers. I just keep reminding myself that I'm not mom or my sisters, and my daughter isn't me. Things are a lot different now then they were back when my mom got sick and they'll be different for my daughter and any future generations to come. My mom died of liver cancer in 1982 and now there are treatments that can allow people to live longer and even recover from the same type of cancer she had.

    Everyday I try to hang on to my faith and live my life to the fullest. So far that philosophy has served me well. Again, welcome to this group.

    Your friend in MS,

    Brenda

  • Blcasey279 Wow and they say it's not heredity. I'm trying to have faith as well, stay prayerful and positive. Honestly, I do have my days but I'm working to be better and more consistent with my faith.

You may also like...