Fairly New

Fairly New

I am 69 and just diagnosed one year ago but believe I've had it since I was in my 40's and diagnosed with Fibromyalgia. I lost the sight in one eye last year. It's a very confusing illness. I haven't join any groups until now because I was afraid that people would be complaining and I want to stay positive. I think it's time to start talking to others.

43 Replies

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  • I was diagnosed in 1996 with MS, I have had so many different flare ups one was losing sight in my left eye after an IV steroid I received my sight back within a few weeks then lost it in the other eye. Of course did the same procedure and it came back. I agree with you 90% is positive attitude, and God will get you through any battle you face. Remember it can always be worse and there are people who do have it worse than you do so quick complaining and live!

  • Welcome but I wish it was an other reason we we're talking. I have MS I had to diagnosed myself in 2004 my neurologist thinks I had it for 20 years. But finding the people on this site is a good thing.

    Have a good 😊 day!

  • Thanks ssdw1958 and thanks for sharing. Have a great day!

  • I didn't mean that to be rude, but inspirational

  • Thank you for sharing.

  • We're free to complain here but most of the time we're positive and supportive. There's a great group of people here and I'm sure they'll jump in and welcome you as soon as they see your post. WELCOME!

  • I was diagnosed in 1996 with MS. I have had a multitude of flare up, I have lost the sight in both eyes at different times, because of steroid IV drips I have received my sight back. As yourself I would not join a group because I didn't want to hear any negative, I believe 90% is your attitude and God for you to stay in the best health. Remember things can be worse and there are people who are in worse health!

  • Thanks Marilyn, it's good to talk to another positive person. I believe as you do about attitude and God. Both help me every day. There are several people near where I live that are in a wheelchair because of MS so I am very thankful. My neurologist doesn't think I'll ever be in a wheelchair because of my attitude. I can only hope and pray. God Bless and thanks for your message.

  • Thanks melack01

  • Hi, cherriwise

    Welcome to My MSAA Community and this chat site. I was diagnosed in 1988, 28 yrs old. I had symptoms from age 18 that no one could explain until I had my first child. But I did try some MS meetings; one meeting most of the people were around my age, but were afraid of the disease and what limitations would be opposed on them; and how much they were going to deteriorate. They frighten me with their fears or I could not relate to their concerns like will I be able to ski, run a marathon. I just needed to live. I wanted to start my family young because my husband was 6 yrs older than me and I enjoyed my career and our new baby. A year later my husband my husband had end stage kidney failure due to Alports disease. So i didn't want to here anything negative. I wanted my son to have mom & dad, be happy, have God in our lives, and stay employed for medical coverage. Then I wanted to stay positive for myself but for my husband and family. I went to a different MS meeting they were either angry or complaining. I didn't go again. And for a long time I didn't go to a MS group but did go to a therapist to keep my sanity and help work through problems. My husband was blessed to have a kidney transplant, 23 years same kidney and we had a second child (and my MS worsen). Now I still see my therapist and my pastor of my church and became more involved with activities in the schools and church. I have to be positive or I wouldn't be able to have strength to persevere when it's hard, and hope for a future. Yes it can be much worse than my current state. Thus, must live, take care general health as well as MS issues. This is the first chat room I liked. And everybody needs some help, socialization, love, care, kindness and be gracious to help others and stay tuned into life. You will find very nice folks here.

  • WOW, your life makes mine seem like a walk in the park. I am so sorry you have had so much going on in your life. But you do have an amazing life. We can always find things to be thankful for. God Bless!

  • And I still do have an amazing life and have been blessed greatly, despite the hardships and trials; 2 beautiful sons, wonderful, supportive husband and church family, was able to work as an engineer for about 20+ years, play oboe, .... and meet wonderful, amazing, supportive loving people who some have became good friends!

  • cherriwise I have had MS since 1977 but, most of my problems have been sensory.

    We do not whine much here but that doesn't mean if you feel like whining or bi@%hing a bit that you can't. Sometimes you just need to let it out.

  • Thanks...what a great group!

  • cherriwise hi and welcome. Here you can laugh, cry, share your hobbies, encourage others, vent, no one judges you. Usually there is someone on here who can relate. Post whenever you feel like it, blessings Jimeka 🦋 🌈 👋

  • Thank you so much. You all are great!

  • I try to keep a positive attitude also but sometimes it is hard.I try to stay as active as I can. I have never joined a group before. This is my first. I stay very active with my congregation. I am one of Jehovah's Witnesses and that gives me a positive outlook . My friends are very supportive. I am truly blessed to have them.

  • Thanks, I found an awesome group! God Bless!

  • Welcome cherriwise. I'm 65 And was dx in April of this year. You have come to the right place. Yeah sometimes we complain but mostly we lift one another up. We discuss our problems and our triumphs. We are a diverse group from many walks of life but we all have one thing in common. This monster called MS. There is always someone that's going thru what you are good or bad. Again welcome and God bless.

  • Thanks so much. You are all great!

  • Welcome Cherri! You have found a great group of people here. The thing I like most about this group is that when you are having a rough time you can tell others and there are always several people to help lift you up and get your positive attitude back. Then another time when someone else is having a hard time you can help to lift them up as well. We are all in this battle together and together we are stronger and can get through it easier.

    Jacqui

  • Thanks Jacqui. I'm glad to know we can unload on each other...good or bad!!! How long have you had MS?

  • I was diagnosed in 2012 but we think I have actually had it since the early 80's. At least that's when I first started having issues with walking, balance, etc. I always knew I would get MS. My mom had MS and even though she and dad said the doctors told them us kids couldn't get MS I knew they were wrong. Recently found out that my mom's MS doc told her he was pretty sure I had MS back in 1981 (I had taken my mom to her neurologist appointment and after talking to me and seeing me walk he knew). Unfortunately, I didn't have insurance and couldn't do anything about it and back then insurances weren't covering much on these meds anyway. At least not the ones I had access to. My parents chose not to tell me because they knew I had no insurance and no way to pay for treatment. I don't blame them. It would not have done me any good to know and it might have changed how I lived my life for the next 30 years and I wouldn't change that (the good or the bad. It is what made me who I am and I like who I am). Sorry. Didn't mean to get so philosophical.

  • So sad. There is much more help this days. No one in my family has had MS going back generations. Being philosophical is ok with me. Hope you have a great weekend,

  • Welcome to our group. It is a great place to vent, share experiences, ask questions. ..whatever is on your mind. I also was diagnosed with fibromyalgia after years of symptoms. When I finally got the right diagnosis, it was mind boggling. Stay striong, but know that you are not alone.

  • Thanks so much!!!

  • cherriwise, great picture! Which one are you? Ha! Either way, you look very young.

    This a a place where we can safely vent, but where we also do a lot of laughing and joking. I hope you find as much encouragement as I have.

    Many of us share your frustration with the often slow and tedious diagnosis process, or that MS was simply overlooked. I had a probable CIS about 20 years ago and symptoms during much of the ensuing time, but was diagnosed last fall when I was 56.

    Have you begun any DMTs or treatments for symptoms?

  • Oh a funny girl...I love it. I'm always the one joking around trying to make my friends laugh. Most days I succeed.

    I'm surprised that so many of us were diagnosed so late. My mom (91) and her best friend are both retired nurses and neither of them ever heard of MS. But, I keep telling them it's because they nursed in the stone ages.

    They tried several MS drugs on me but the first one I ended up in the hospital needing three blood transfusions and the second I was in the hospital with pancreatitis. They don't know if the medication caused these things but because of my age they said they were going to take me off all MS medication. Are you on meditation?

    I look younger than my age because I never had children and only had a husband for a few years. They both age you! I'm kidding. I would love to have had a family but I was not able to. I just borrow my friends children and grand children and give them back when they get cranky!!!

    Thanks for your awesome reply!

  • You are very lucky and wise. I had kids grandkids and grandkids and had to keep them. Haha. Just kidding. Hope you get as much hep and encouragement here as I have. Good luck and God bless.

    Donnie

  • Kids grandkids and great grandkids that is. Lol. Have a blessed and wonderful day.

    Donnie

  • You too Donnie...thanks!

  • Very funny!

  • Yes, I take Copaxone, but that's been it so far besides Baclofen for muscle spasms.

    I used to be a nurse long ago. Methuselah was my first patient.

    I thought I had learned plenty about MS in nursing school, but when I discovered that was what I was dealing with, I realized I had known next to nothing. I've had quite an education since then!

    I'm sorry you didn't respond well to those medications. I do hope your symptoms can be treated, however, and that you don't suffer with them any more than necessary.

    Take care. I'm so glad you found us. You'll obviously make a great contribution to everyone here.

    Erin

  • Thanks Erin! Have an awesome weekend!

  • I love other people's kids!!!! Shake them up and give them back!!!!!😂😂🤣🤣

  • Hi @ cherriwise

    I'm Angie, I was 64 when diagnosed in 2016. I am sure I had MS for at least 10 years prior and was misdiagnosed with Fibromyalgia. I had 2 lesions at the time and was started on copaxone. I have not had new lesions. I have good days and bad days but I try to drag myself around and not stop. I had a third knee surgery (same knee) so I am now back in rehab and I hate it because I am lazy. But I'm trying to go. I am learning that I have to pace myself so I don't over do and pay for it the nex day. You have found a good group here. Have a good day.

  • Welcome cherriwise. Great to have you on board!

  • Thank you!

  • Stay positive and keep the faith.

  • Well, you won't find too much of that here! Some, because this monster sucks. But this site is full of amazing wonderful people that listen and help! Sorry to meet you because of MS. But it is nice non the less! Welcome aboard!!!

    Rob

  • Welcome! It's great to be in this group, you learn a lot and everyone is very positive and understanding. 😎

  • Cherriwise, Welcome to our group! We try to be very supportive of our good buddies here. Sorry that life has brought you here, but we are happy to meet you. I am 74, diagnosed 3 years ago, and have no major issues. Mine are "all in my head", as with cognitive issues, and fatigue, which slows my walking only occasionally. I am on my 2nd year of taking Tecfidera, with no problems so far.

    I'm a little jealous of your youthful look. But, will try to be thankful for all my wrinkles and white hair! I've earned every one of them! My husband and I will soon be celebrating our 56th anniversary, and we were blessed with 2 children and 4 grandchildren. What He brings us to, He will bring us through!

  • Hi!!! I always try to stay positive about this monster MS!!!!!! I was the same way!!!!! Stay positive, PLEASE!!!!! WE GOT THIS!!!!!

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