New to the group!: Hi all MSmom81 here... - My MSAA Community

My MSAA Community
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New to the group!

Hi all MSmom81 here! New to the group, hoping to help and receive support. I have had MS for 10 years! Things are starting to scare me and nobody I know has this horrible diagnosis!

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Welcome to our crazy ๐Ÿ˜œ group of MSers. This is a great place to vent and find out lots of information about MS from people who care and are living with it ๐Ÿ‘. I was diagnosed over twenty four years ago and have been on seven different DMTโ€™s over the years. As one quit working and new ones came out I moved to better treatment options ๐Ÿ™. I am currently on Aubagio for the last two years and my last two MRIโ€™s were stable and no new lesions ๐Ÿ‘๐Ÿ™. Feel free to jump in anytime and as you see there are a lot of animal lovers here ๐Ÿ˜‰. Ken ๐Ÿพ๐Ÿพ๐Ÿคฃ๐Ÿ˜Ž

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MSmom81, Welcome! We are going to be your new Best Friends here We certainly are not Doctors, but I bet many of us has experienced the same things you have and may have answers of what has helped us, Don't be shy, ask away!!

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Thanks guys! I feel like I really could use the support right now! My fiancรฉ and 3 teenagers are very helpful but do not quite understand how I feel. The past few months have been very terrible and Iโ€™m not sure if Iโ€™m going to get back anything from this relapse! Iโ€™ve been out of work starting another treatment, moved to a more ms friendly home but I canโ€™t seem to keep my emotions or exhaustion under control! Any advice?

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Are you on any antidepressants? Also there are some medication to help with fatigue. You need to have a neurologist that specializes in MS and a primary care doctor that is willing to work with your neurologist to help get you started ๐Ÿ‘. Are you on a DMT? Thatโ€™s a big start. ๐Ÿ‘๐Ÿ™๐Ÿ˜‰ Ken ๐Ÿพ๐Ÿพ

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I am on aubagio but Iโ€™m switching to tysabri on Monday. I am currently on 2 antidepressants and adderall for my fatigue and I feel like nothing is working right now ๐Ÿ˜ž

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I was on Tysabri for seven years and it worked great for me๐Ÿ‘. I was taken off because of my cancer โ™‹๏ธ diagnosis, dang. Was not able to go back to it, so Aubagio was next and has worked great ๐Ÿ‘. Hope that the change helps and maybe itโ€™s time for antidepressant change? Let your doctor know thereโ€™s nothing wrong with change๐Ÿ™๐Ÿ˜‰ Ken ๐Ÿพ๐Ÿพ

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Welcome!

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I think you'll find lots of support here from people who really understand. We also share our hobbies, ideas about coping, encouragement, and more. MSAA has some excellent resources, so check their page for things that may be of help to you. Welcome to the family.

mymsaa.org/

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Welcome to the group you will find support here

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I was diagnosed in 2010. I started on Avonex. Switched to Tecfidera. Then after issues with Tecfidera (vivid dreams) I switched to Tysabri. I was on TY for 3 1/2 yrs then switched to Ocrevus after I started having issues with the TY not lasting. Which sucked cause I liked TY. I take Nuvigil for energy and Amprya to help my walking. Among alot of other meds. Have any questions. Just ask. We will answer the best we can.

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Welcome to the family! We know how you feel! Been there, done that, wore out the tee shirt! Talk with your Neurologist, honest and openly and tell her/him exactly what is going on with you! I had bad side effects with Nuvigil, but Provigil helps a

lot with fatigue, and I've tried so many different antidepressents over the years, I don't remember their names! Effexxor EX works great for me, and I have been taking it for many years now. I was diagnosed 38 years ago, and I still go through changes/symptoms that are new! Please let us if we can help!

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I bounce back and forth between Provigil and Nuvigil. Depression meds. I once took Effexor and it effected everything besides my depression. I know. Not funny. I was on Zoloft. 250 mgs a day. I'm now on Remeron. It seems to be helping.

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That's what we have to do...keep trying until we find what works for US!

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Welcome. This is a great place to share whatever is on your mind whether it is to vent, get support, tell jokes, or just to say hi. Everyone here is wonderful and have really helped me with great advice and tips along the way, I know they will help you too. I was diagnosed January of 2018 with Primary Progressive Multiple Sclerosis.

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Hello, and welcome to the group. I have had MS for 28 (since diagnosed), and I have done fairly well. Some vision problems and get tired a lot, but have been able to continue to work. I hope your form of the disease treats you as well as my has treated me, or better.

I had a graduate professor whose wife had had MS for many years, he arranged for us to have dinner and she shared her wisdom. It was helpful. I had to take a semester off of school while I recovered from my first major exacerbation, and a month off of my ministerial responsibilities. I am leaving next week for a two week trip to Tanzania to teach at a school of preaching. I am looking forward to it.

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Tanzania?cool!

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Welcome! Glad you found this group. Here you will find support and answers to allay all those fears. Feel free to ask anything.

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Thank you so much everyone! I believe that talking to people who know how I feel will release a lot of stress! I have had several appointments with my neurologist and psychiatrist! It just gets really frustrating when you constantly repeat yourself of how you feel and meds have changed but how I feel has not ๐Ÿ˜ž! I went from totally independent to having to rely on my fiancรฉ and kids and that is taking a huge toll on all of us! They never complain but I can tell they are tired. I went from working almost 60 hours a week and fully functional to not working now since May 15th. I also have a cane to walk with, disabled parking pass etc..... Iโ€™m just not sure where to go or what to do! Iโ€™m not sure I can return to work anytime soon and that scares me as I love my job!

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Welcome! As I tell everyone now, please read the book by Ann Boroch "Healing Multiple Sclerosis." I have found out about it here, and it has changed my life.

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Welcome, glad you found us! I was diagnosed in 2005 & currently on Ocrevus & love it. You can learn a few things, share your thoughts & feelings or whatever you do for fun, etc. all without being judged. A great place to chat.

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Welcome to our team! You've found a great place to get information.

Warm Wishes,

Leslie

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Welcome to

The group!

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Welcome! I'm the ex-CEO of 2 companies, concurrently at one point, originally an Engineer running an electrical components plant in Mexico for a multi-national company, someone who has had M.S. for over 2 decades. I've had a really, really interesting journey with M.S., having what seems like it all including some really wild ones that most people haven't heard of,....been on DMT's till I was told no more by my M.S. Neurologists, plural, finally convinced to retire, and slipped into a "comatose state" for a few years- (just really heavy brain fog) that made me useless. Long story in a few words. I found Nutrition, Nutrition, Nutrition, without modern day processed foods. I'm not without a whole long list of "gifts" from M.S., but I've been relapse free for over 5 years now, and I'm getting better, even loosing some of the "gifts" specialists said, would be for life. Yes, I talk too much. Funny, because I used to be the quiet one? As far as people not understanding...my parents died never understanding. So don't feel bad. Sure you've seen it written all the time. It's common and real. So now, I'm on and promoting Healthy Eating Without Processed Foods. On no Meds whatsoever with my Doctors' approval, and CBD Cannabis evenings for the neurologic burning feet that isn't in my feet, but in my brain I'm told. And yes, Cannabis with THC (certain Sativa's specifically) for fatigue when I can afford to put the keys away for the rest of the day. Yes, I talk to much.... I have to do something now that I don't have to talk 18-20 hours a day work related. Welcome!

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we welcome every word!

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Hey MSmom81 this is the place to be! For help with problems or to help others with their problems for sure, I was dx back in โ€˜01 & came to this place & found it very helpful myself!

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Hi MSmom81

I too have had wonderful support here. I truely appreciate everyone's voice in giving advice, opinions and funny comments. Welcome and NEVER GIVE UP is my motto!

Blessings to youโคbecky

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Welcome to this wonderful group of caring people. Look forward to getting to know you.

Jessie

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Just when I think I am stuck forever in a relapse...the sun shines..i have to keep remembering that...there is hope.you all are so good at that.

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