Very lost

By saiyuki1609

1 min read

I'm a 24 year old stay at home mom of a 3 year old boy. I've been diagnosed with MS 2 weeks ago, and as you can see in my title, I'm extremely lost and overwhelmed. After my hospital stay, I was sent home with little to no information about MS and left to run free with the internet. Aside from little pain management, running out of pain medication before my first neurology appointment, flare ups, and trying to make my son understand why it's not a good time to touch mommy right now, things are not looking peachy. But the thing that stresses me out the most, is people telling me to "don't stress" Amongst this hurricane, what should I do from here? What steps do I take? If anyone has any advice, please share. Thanks for listening to my venting.

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Meagan Heidelberg Moderator
Hi Saiyuki1609, So sorry to hear of your recent diagnosis but we commend you on reaching out! First, here is information regarding what Multiple Sclerosis is exactly; <a href='https://multiplesclerosis.net/what-is-ms' target='_blank'>https://multiplesclerosis.net/what-is-ms/</a>. In addition to that, we have a wonderful article regarding "Advice for Newly Diagnosed"; <a href='https://multiplesclerosis.net/living-with-ms/advice-for-newly-diagnosed-from-someone-who-cares' target='_blank'>https://multiplesclerosis.net/living-with-ms/advice-for-newly-diagnosed-from-someone-who-cares/</a> written by Cathy Chester - a wonderful writer who has been diagnosed with MS since 1987. We want you to know that you are not alone on your journey. You can feel free to reach out to us at any time. We are listening! Our community members are awesome and will share advice they have as well. Also, here is another great article on managing stress that you may be interested in reading; <a href='https://multiplesclerosis.net/living-with-ms/how-do-you-manage-ms-stress' target='_blank'>https://multiplesclerosis.net/living-with-ms/how-do-you-manage-ms-stress/</a>. Best, Meagan, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member
1. saiyuki1609 Member
 Meagan, These are very helpful. Through the past 2 weeks, I found out that I'm very introverted towards certain things and I don't speak up a lot especially around new people in new environments. Talking to the doctors about my pain was difficult because I didn't want to seem needy of meds and didn't want to bother them too much. So pain management is really rocky, and with an active boy, it's sometimes overpowering. At least with your helpful links I will be able to get a standing foothold about MS. Thank you
bjshockley Member
I was sent home with no information too. In fact my experience so far has been very little help from Neuro doctors. They tried me on Copaxone but I was too far gone by the time they diagnosed me. I had been going to them so many years over problems and they would say there was nothing wrong. So I guit going. Then she they finally said MS but no active lesions I was afraid of side affects so I refused DMDs. Went back 2 years later, Cognitive problems, started DMDs, still no new lesions but deteriorating anyway. It has taken my Neuro leaving and getting a new one for them to admit I had passed RRMS a long time ago. From the time that they finally diagnosed my MS I had so many Numerous Lesions on both sides and in connecting tissues or whatever that part is called that they did not even count them. During all this time they never talked to me about symptoms what to expect or anything. I learned everything from groups like this. Mainly from Patients Like Me a website where you can join under MS. But I also belong to groups on FaceBook that are very nice in addition to this one. If one of your symptoms is pain, I recommend you get referred to a Pain Specialist right away. That is best. If he doesn't help you. Get a different one. There are good ones out there.
1. saiyuki1609 Member
 Thank you for the information. I just had my first appointment with a neurologist and it was a bit overwhelming. He told me to research more about ms and look into meds. Then comeback in 2 weeks with any questions I might have. I think it's also with my problem of speaking up, that I feel like I can't get anything across.
murphy Member
@Saiyuki1609 - Please go to <a href='https://MyMSTeam.com' target='_blank' rel='noopener noreferrer ugc'>MyMSTeam.com</a> and join. It is a 'Facebook like' site for MSers. Everyone there has MS and shares their personal experiences with MS, with each other. It can be so overwhelming when you are first diagnosed. I was diagnosed in 2004 and getting any information was very difficult. When researching MS I even read an article, by a National MS group, that MS was NOT painful. What a rude awakening was waiting for me. (MS is and can be very painful.) Please keep in mind that every case of MS is as unique as each person who has it, is unique. We, the MSers are the ONLY TRUE experts on MS. Best of luck to you as you embark on this life's adventure!
1. saiyuki1609 Member
 Thank you and I'll join right away.
tomn Member
Dear new patient, My advice is to learn as much about MS as possible. There is a lot to learn. Best place for me is: <a href='https://multiple-sclerosis-research.blogspot.com' target='_blank' rel='noopener noreferrer ugc'>http://multiple-sclerosis-research.blogspot.com</a> It is written for MS patients to learn about biology, new research and treatments. Hope you like science. It has allowed me to work with my neurologist to decide on what I think will be my best course of treatment. I chose this one: <a href='https://multiple-sclerosis-research.blogspot.com/2015/12/cladribine4ms.html' target='_blank' rel='noopener noreferrer ugc'>http://multiple-sclerosis-research.blogspot.com/2015/12/cladribine4ms.html</a> . It's off-label, so it took some convincing. You want to treat to NEDA, probably using one of the more effective drugs. Figure out what will be best for you. If it isn't working, try something else. Best wishes.
1. susanna Member
 Can you let me know how you went about obtaining Cladribine ? I believe it isn't licensed for MS
Member
It's been over 20 years since I was told that I had M.S., that my career was over and I had 3 children all under 5. I was angry, very angry with how my life had been turned upside down. 23 years later I will tell you that yes my life changed, however, I ended up with a very happy life. That was just to help you see down the road and that it's not all bad. Advice I would give you is to look into and talk with your doctor about a exercise program to help maintain strength, flexibility, and balance. (look into programs for the elderly) -I found books and legos helped a lot with the kids on bad days 😀 -
atanner66 Member
My youngest was just a year old when I was diagnosed; she is now 18 and graduating high school next month. Take some deep breaths and try not to be overwhelmed. You are going to discover that you are your own best advocate, you must research and study MS as if it is a job now. Taking care of yourself and your family is your job and you can not take care of your child if you are not taking care of yourself. No two people with MS have the same experience or the same disease, but you MUST learn to speak up. Find a neurologist that specializes in MS not all neurologists are created equal; ideally this will be someone you feel comfortable with and can talk freely and honestly with. Good luck, positive thoughts and blessing! Oh, and DON'T stop moving the best thing you can do it stay ACTIVE.
dolphie Member
I was diagnosed about two years ago, and felt as lost and overwhelmed as you are feeling right now. That feeling does subside, in time. If I had listened to everyone, and not stressed, I wouldn't have felt the feelings I needed to feel to get where I am today. I feel there is hope and I will get though this, one day at a time. I will say this, if there is anyone you trust that is close to you, a spouse, parent, or friend have them accompany you to your appointments. This will help with the questions you want to ask, and remembering things. Ask them to take notes while the dr is talking, they may even be able to ask questions you haven't thought of. My mother was this person for me, she was just as concerned and curious, but not as overwhelmed and scared. She listens, supports my choices, and has never tried to tell me how to feel or what to do. Support groups are a good place for support as well. Just remember to take care of yourself, because your son needs his mommy to be healthy, well, as healthy as us MSers can be. Stay strong!
nobu Member
Saiyuki - make a list of all of your questions - it will make it easier to talk to your doctor. I do this myself all of the time even though it has been 16 years since I found out I have MS. And put them in order of what is bothering you the most. If you don't get an answer or some assistance on something, them keep asking the questions again. Work hard with your doctor to find the right pain medication. I tried many and now take Cymbalta for nerve pain. It helped me so much. But not every med is right for everyone so understand that and take your time to find what helps you feel better. You may want to check out physical therapy with someone who deals with MS - it can be very helpful. the suggestions here from other MS'ers is very helpful so try what seems to be best for you.
hlaurene Member
My advice to you is to read everything you can on MS, and make a list of all your questions. Find a local support group and go. Talk to people and find the very best Dr you can in your area. I drive 90 minutes to see mine but he's worth it! At first I had a Neurologist I wasn't thrilled with and that's what I did. They specialize only in MS and he is on the cutting edge with all the latest info and treatments. I know you're scared. It's very natural. You're not in it alone though. There's a lot of support, and there is hope. We live in an amazing time in medicine! Good luck and God Bless!
cherken Member
My first MS symptoms began in 1995 & I was dxd in '98. I am now 47 & have been taking Copaxone since '98. I was just like you in the beginning. My ophthalmologist told me over the phone I had MS. She wouldn't give me any info & said my new neurologist would answer my questions when I was to see him in a few weeks. I knew so little that I thought I had Muscular Distrophy & the first thing I did was hug my husband & cry bc I thought we'd never get a chance to grow old together. I went to BN that night & bought three books, all of which were out of date. There wasn't an Internet like there is today. They did make me feel better just reading the basics though. My advice is to stick to websites such as this one. This is the best I've found to date for reading real life experiences. Please don't do searches on specific things until you know exactly what to search for. And don't forget to take any negative experiences you read about with a grain of salt. There are SO MANY people doing well with their MS. They aren't the ones who necessarily write their stories on the web though. It is overwhelming & scary. I promise that will get better as you gain more knowledge. I'm one who doesn't like hearing "stop stressing about it" also. But it helps to find something you like to do to take your mind off it. And REST as much as you can since you are naturally very stressed right now. God Bless you and I wish you all the best. Things will settle down once you find some meds that help & you feel more comfortable with your new life. You will find your way through this.
ldg1230 Member
Hi, when I was dx-I was at a lost. I am a single parent, and a teacher, and I was overwhelmed. I was reading lots of information, and I was on information overload. And, my mom told me to go to a healing mass. I was thinking-she thinks this is going to get cured? I went, and it healed me. My reactions to having MS. So? I accepted I cannot do it all. Oh, I am still a single parent and a teacher, but, I know I have limits. I listen to my body. I cannot jog or play tennis like I used to, but, I can do water aerobics, and swim, and MS yoga. I also enjoy reading some books-MS for Dummies, and the MS booklets for people new to this journey. And, I am grateful that God gave me this instead of someone who cannot handle it. I am teaching in a wonderful school district. I taught 26 years in the elementary school-children with special needs. And, they moved me to the HS because I can not pick up the children, or run after them. And, I was having a hard time wrapping my head about helping these kids with Physics, trig, and calc when I spent all of my teaching career teaching kids how to count, sort colors, etc. And, I was placed in a position in the Central office. I am not a CO type of person. I am a teacher. And, so, I am working at the HS again, as a sp ed teacher, but a smaller hs in the district that is laid back. I am learning every day to rely on my strength and my cans, and to adjust my cannots. So, if you are married, rely on your husband. If you have your parents around, rely of them. Rely on your friends. If you can get into a support network-do it. You can always talk to me, I know I have lots of questions, and I wrap my head around, and just remember you are not alone. I feel blessed, I was dx when my daughter was in her last semester in HS, but I have a friend who had 2 more children with her dx. Just get a support system, talk to your dr. And, smile and say thank you for all advice, and say I will ask my dr about that. And, one of the things I started keeping is a health journal. I write about my MS and everything that could be ailing me. Lisa
bobbymezz Member
Take a deep breathe and stay positive. Remember you can't control your MS, but you can control how you respond to it. When I was first diagnosed in 1996 I did what you did and picked up a bunch of books about MS and did research on the fledgling Internet. In a nutshell, I took Avonex, I don't know if it really helped. For the first ten years I had one or two attacks a year. Bladder woes kicked in around 2000. I struggled until I started to self cath in 2006. That was a huge change for the better. But my walking endurance was diminishing. By 2011 it was hard to walk the 30 yards from the parking lot to my office. I knew I had to do something. I read the book Overcoming Multiple Sclerosis. The book has changed my life for the better. I went on the diet (vegetarian plus fish, no dairy, similar to Roy Swank's diet) and followed the other protocols (vitamin D, exercise, avoid saturated fat). It's hard, but if you commit to doing everything you can to stay independent, it's a small trade off. I lost 40 pounds and have kept it off. My past two MRIs have shown no new lesions. My walking endurance is way up. I did 20 minutes on the elliptical this morning. My neurologist and MS nurse say for someone who's secondary progressive I'm doing really well. The OMS site is worth checking out. Good luck!