MS has met "its" match !

Hi Everyone, I am new to this community, but from what I read I know I finally found the right "place" to be. There is way too much to get into right now so I'll give you the condensed version. I am a single 52 yo female who has never been married & has no children but I have a dog. I was diagnosed w/RRMS in Nov. 2009 &the fun has never stopped! I have used Copaxzone, Rebif: Tysabri; Tecfadera & now I in March of this yr. I had the Lemtrada infusions. So far I have noticed some positive results, my gait doesn't make me look like a drunk & my "word finding" is not happening as much. My main "problem" is cognitive issues,being in a conversation & completing forgetting what the topic is or completely forgetting what you were going to say. My favorite is when I'm talking to someone when "the "look" comes over their face & I realize clearly I wasn't on the topic I started on or like right now I'm typing along then for some reason I'll forget what I want to type next. There is so much more and don't know how long or in depth this is suppose to be so I'll stop here because the"back story" is not as important as dealing w/my cognitive issues. I have started isolating myself again, which we know you can't do because depression w/MS is a lethal cocktail. Any tips &/or advice out there.....

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  • Welcome to the group. I think they are great.. I'm sort of new here and was just diagnosed in August. Because of my age, 68 I was referred to UCSF for more evaluation and have had mri's of brain, cervical and thoracic spine, spinal tap and 33 vials of blood drawn in the last 2 months. Now waiting for all the results and start treatments.. I was incredibly active long distance bicyclist (150-200 miles a week) swimming when I wasn't cycling. Now numbness and tingling from ribs down. Feet and backside feel like they are in blocks of ice. Praying for any amount of remission...

    Lynn

  • Thank You for welcoming into the community. I am a Registered Medical

    Assistant and before my MS diagnosis rendered me "disabled", I loved going into the office every day. I never once thought of it has a "job", 12-13 hr. days meant nothing to me because I never watched the clock I watched mt patients, so in a way I can empathize with you. I can't lie, this is going to be a very difficult time for you, my best advice is to start putting together a strong support group. Family, friends, neighbors, someone who will always be there, that you can call upon at anytime, especially last minute. Write everything down, MS is notorious for "stealing" your memory, write about what you're feeling however insignificant you might think it is, both physically and emotionally so that when going through this initial phase if anyone asks especially you Neurologist and all the other medical personnel you'll have coming in and out of your life, does this happen to you, have you experienced this, when did you first notice this....you'll have the answer. It is such a cliche' but with MS it's the only way to live, TAKE ONE DAY AT A TIME !!! Hope we can chat again. Suzanne.

  • Hey Lynn your not new here lol what are you talking about :)

    CalfeeChick

  • 2 months or so is still pretty new to me.

  • Lynn you were more active than I was my whole life, hope they get you going with a treatment that helps and gets you back to yourself soon. Have faith in yourself.

  • Thank you, I'm trying to get back to more active even if it's just around the house. I generally pay for staying up on my feet by having more tingling and funny little electric shock waves that go from feet to knees, sometime my behind. Uncomfortable, but not painful. I do have faith in myself and try to be good to others. I've had a few down times, but remain optimistic! Now if I could just remember where I put my energy! :-)

  • Welcome! You have found a good place to be!!!

  • Thank You...I think I'm going to like it here.

  • This is a great group and though I have only regularly checked in I am going to each day. Advice and comradeship is abundant:)

  • I wish I knew the answers, I think the biggest question we all ask at sometime, is why me? Both of my sisters have had breast cancer, 1 is ok, the youngest one is terminal, but you look around you and wonder. My parents were good Christians, bringing us up as well as they knew best, and we all did well in school. I have a brother who only ever caused discord in the family but he breezes through life. Please don't misunderstand me I don't wish any ill on him. I come from a strong farming family on both sides, and I married a farmer myself, we have 3 wonderful children, all very successful in their chosen vocations, but today is a very down day. As you say ms and depression don't mix. I have always been a half full girl, but just recently I feel as though I am half empty. I think going from an active life to an almost sedentary one has a lot to do with it. There are so many beautiful things out there but you aren't always in a position to take advantage of them. Anyway my American friends, have as good a day as you all can, take care, God bless Jimeka. I guess we are all in the same boat, maybe we should have a singalong!!

  • If I sang, you'd kick me out of he boat 😉

  • No, don't worry , I can't carry a tune or even drag one !!! We just need to sing louder together !!!!!

  • Ha! I appreciate the laughs. Thanks, my friends.

  • Dear girl,

    I wish I could say the thing that would raise your spirits, especially since you are marvelous at encouraging others. I know our faith is our firm foundation, but that doesn't ever mean we don't struggle.

    I recently had a couple of emotionally bad days, very uncharacteristic for me, and I feared that I would slide into full blown depression. I don't know what turned the switch, so to speak, but part of it was that fear. I sure prayed a lot, too. I didn't want to end up truly depressed. I know it isn't always in our control, but I don't want to give up any more control to MS. I tried to do the things I knew would help fight depression, and with the grace of God, I'm feeling better.

    There are many people praying for you, and I pray for God's comfort and strength for you.

    Keep us posted about how you are feeling. You are cared about.

    Your farm girl friend

  • Sending you a 💓, Jimeka. You're such an encourager. It sounds like you can use some today. Will 🙏 your day gets better and hope you awaken fresh tomorrow, with your glass overflowing.

  • If we are all in the same boat at least we are not in the water, I can barely dog-paddle.

  • Hi Me63, I'm 58 and although I have a list of physical symptoms, they are minor compared with the cognitive symptoms. For that reason, I stopped working (yesterday). It's easy to get caught up in the negative feelings. I loved my job. It has given me so much fulfillment and self-identity. There is a sense of shame (for me) about the invisible cognitive disability. I'm sure I could isolate myself too. I'm working at redefining who I am, and at the same time remembering I am really still me. The support here is wonderful. Please be well and reap the benefits of others here as I am.

  • Hi Me63 Welcome to the best chat ever :) Sounds like you have been on this roller coaster ride for along time. I'm still learning about it all. But l do know about depression and what kind of effect it can have on you. I also can relate about losing the train of.... oh look a squirrel... ugh lol :) My attention span is about the span of a 2 yr old. It's horrible and lm not even sure l can blame the MS on that one. Lol

    As you can tell from reading some of the posts here we talk about pretty much anything and everything here but most of all support each other always. We are all in this together. Jes

  • I can't believe it after almost 7 yrs. in 2 States, I found my "pot of gold" !!!!! I am so overwhelmed w/the reception I am getting on this site, THANK YOU Jes for your reply I think we'll be swapping a tale or 2 or 3.... Suzanne/Me

  • I also had mostly cognitive issues at the beginning. Had to leave my job as well. I was/am? A CPA. My job involved billions of dollars and it's not good to miscounted them, or forget to count them, or forget to tell someone to count them, or forget when you asked, they did it, and you asked them to do it again. LOL. I am quite sure my staff hated me before I found out what was going on. Took me over a year to disengage my self worth from my employment. But I did and I'm happy now.

  • Gee... Are we sisters??? Single, 52 (in Dec.), no kids, 3 dogz, divorced *should have just been friends; he's gay, but still friends), MS since 1986... We sound alike though I've known about the MonSter longer. When I turned 50, the challenges REALLY began, but this tough old redheaded chiCk is a FIGHTER!!! Rock on Sister!!! (seriously, forgot what you asked--yeah, keep your F*&!!! mits OFF MY BRAIN MonSter!!!) Oh well... I'm SO WITH YOU!!!

  • OMFREAKIN'GOD !!!!!!!!!!!!!!!!!!!!!! I'm a RED HEAD too !!!!!!!!!!!!! I absolutely love your reply & I have a feeling I'm going to be saying this A LOT for awhile, THANK YOU so much for your reply !!!!! I can't believe I found you "guys" this site is what I been looking for & desperately needed !!!!!! I am so overwhelmed, even though I feel like somebody beat the liven' sh*t out of me, my heart is BURSTING w/joy, excitement...I feel like it's Christmas AM and I can't get to all my presents fast enough to unwrap them. Thank you again, Sister !!! Suzanne/Me

  • Oh... Depression... Better living through chemistry! On Cymbalta myself though was also on Prozac which gives extra energy... Don't remember why I switched! Taking a little happy pill solves my problem beating the anxiety out. My FAV neuro in Ohio (yeah, moved 1.5 years ago--fun times!) had me start on meds because our brains have extra issues when the MonSter is trooping around up there! xo Cj

  • Sounds too familiar to me! I wasn't Dx with MS the Relapsing PPMS version until I was 52 (last year) and I'm a female as well. I lose my place in conversations as well and being a writer made this all too difficult, sad to say. I had to laugh when you brought up the "look". I don't know how many times I've experienced this. Or it could just be the PBA I have experienced lately. Usually I find myself crying for no reason, but last night I couldn't stop laughing. I hope you don't have to go through this...losing the topic is bad enough. Which I just did, so time to go. Best wishes to you!

  • Writer? Me too! Haven't been able to write a thing (nor read) for 2 years now. So very frustrating. But I have the hope that things will turn around and I'll be able to do so once again. Yep, gotta have that hope!

  • What name do you write under and what kind of writer are you, you dark horse?

  • Nonfiction writer to date. Newspaper and TV before kids. Then owned my own business writing UST (underground gasoline tank removals) site assessment reports when they were both in school. LOVED my work. Then MS hit. Waited a year, but still not able to work, let alone walk, so shut it down. That was in 1992. Sad day that was. Went through years not able to read or write due to MS cognitive issues, but tried it again in 2009. Kind of reinvented myself and began writing for inspirational/Christian publishers (devotionals, Guideposts, Dayspring cards, and Chicken Soup for the soul books). Have a novel in me, but having a real hard time getting it out. 😉Difficult for me to attempt fiction as it is, but impossible to write at all these past two years thanks to MS again. But...I went through this for years before. I'm hopeful I'll be able to tackle it again. MS can't steal our hope, right? I hope you are feeling better, Jimeka. Maybe the excitement of your grandson's party kept you on a high, but you're feeling the letdown after it passed? That coupled with your nasty fall would bring me down. Perhaps you need something new to look forward to?

  • Thanks Tutu, you have led quite an exciting life, despite the ms, you are an example for us all to follow. I am down because I bent down to pick up the laundry basket, and my back went just like an elastic band popping. It really hurts so I am in bed with heat pads on it. The bad thing about it is that only last week I thought that my back was behaving and it hadn't twanged in awhile, then, it goes. They say words spoken by the mouth, but mine was just a split second thought. My grandson has just entered a short story competition, he received a letter saying he had won out of 45000 entrants, only to find out when he went to school, that everyone in his class had got the same letter. Basically it's a scam, to make money out of parents who want to see their son/daughter published. He was so dissappointed as we all were, he is only 8 but has the literary skills of a 16 year old. My great aunt was a writer, she was so funny, and my cousin writes romances, and her niece is also a published romance writer. I thought maybe the skill had been past on to my grandson. Sorry for going on, God bless, and you will write again, "I know the plans I have for you saith the Lord, plans for good and not for evil, plans to give you hope and a future" So Tutu you will write again.

  • Ah, thank you, Jimeca. I love that verse from Jeremiah! So sorry about the hope given to your grandson, only to have it taken away. It's good his parents realized the truth before acting on anything. And who knows, he may still have the family talent! I am so sorry about your back. I can't imagine the pain you are in. Are you able to get to the doctor? Sounds like you need more than a heating pad and rest. I think you can use that verse from jeremiah too! I will 🙏 you feel better quickly and are able to return to your daily schedule.

  • Boy do I know what you're saying Tutu! Hope springs eternal...can't remember where I got that from-lol. Fortunately I've saved most of my writing on my computer, UNfortunately some of the poems, stories, novels, I've found, I don't know if I wrote them or it would be plagiarism. Haha?

  • Sure helps knowing someone else really understands. Sometimes it's 'misery loves company.' I've joined that party often enough. But 'hope springs eternal' wins, hands down, every time. Are you able to write at all these days? And you've written a lot! Writing a novel is quite an accomplishment. Congrats on that! And your 'found' writings on your computer? Bet you didn't realize you were such a good writer. Here's hoping we both are given the opportunity to create with words again.

  • Ha ha I love that you "get it"! I've written, or should I say I have started lots of stories even half written novels (or 2 or 3 lmao). I started writing when I was a teenager, but never had the courage to send my stuff in until my 30's, but then I was a single mom and too busy. Now she's married and has her own daughter (1 yo) and I have the time...between finding the words I want and now my memory stinks...ah well, some days are good, some days aren't. There is one novel I really want to finish called Kingdoms of Heaven where a group of young kids (cousins) find an angel who needs their help to get back to heaven.

    I'm betting you will be writing tonight. Thanks to this dialogue I quite inspired. I have to thank you Tutu and Jimeka!

  • Great story idea! I hope you complete the novel. Sounds like a fun story. Yes, life gets in the way of writing. Don't know how 'pro' writers do it full time. My two writing critique partners are under the gun meeting deadlines for their upcoming publications. I live vicariously through them. 😉

  • I try to live vicariously through lots of writers. My daughter was taught American Sign Language and Robotics (how they go together I'll never know-haha) High School by a man who is a published author and award winner. He writes not so gory horror stories and teenage "....." can't remember the word I want. You'd think I'd know it because it's become all the rage in the past few years, even has a show about them called "The Walking Dead". Anyway... I tried to talk to him as much as possible, (until my daughter gave me THE look, you know the one I mean-lol) until a few years ago. Oh yeah, Zombies...ugh. He wrote several books about a teenage girl zombie. Plus a few other books that are much better.

    Tried to read some of what I wrote last night, but my vision gets a little funny at night. I'm going to keep trying and hopefully I write some more.

    Thanks for the encouragement ! I know you can do it too! What are you working on?

  • Mornings are best for me too. More mental clarity and energy. But this brain problem with organization, creativity, etc. gets in the way of my writing. Currently(if you can call it that 😉) working on a contemporary women'sfiction novel about a young woman'ssearch for her 'roots. Zombies? I wouldn't sleep at night. 😱

  • I wouldn't sleep either. I don't have any organizational skills or creativity anymore. Haha? Why do I find that funny? I can't draw or paint anymore because I've always been right handed and where am I effected by MS? Yup, the right side. I should try to draw and paint with my left hand, but I'm too scared I won't be able to do that. Haha, so much for being ambidextrous...well, maybe I'll try?

    I'd love to know more about the women's fiction novel you're working on! Especially because you're looking into "roots". I should have stayed with the history degree I started in 1988 (blahblahblah) years ago. Get working when you can and keep me updated!

    Hoping you're feeling good today! It's getting cold here so I'm achy. Saw my neuro today and he said some people have issues the colder it gets. (He's so nice and knows a lot about MS. Even instructs "newbies" and other doctors and staff who teach MS and the ways to treat it.

    How depressing, the weatherman just said we could have snow by next week. Aaaaaah! Then again, I no longer live where the snow will hit first.

    Again I agree with you about the mental clarity and energy thing being better in the morning.

  • Snow? Do you live in CO or such? When we lived there, it usually snowed by Halloween. We rarely get snow here in WEstern Washington. If you feel the desire to paint, you should try with your left hand. Maybe you'll find you are gifted in a new way. And what a blessing it is to have a good neuro. I feel the same about mine.

  • Not CO, but Upstate NY closer to Canada than downstate. Wouldn't you know it sure enough there was snow on the ground this morning-grrrr. It hasn't snowed this close to Halloween since I was a kid. I know when I took my daughter out trick or treating years ago, it was so warm she didn't have to wear a coat.

    You're telling me to try painting with my left hand too. I really need to try to. My doctor and friends keep telling me to try. Ya know, maybe I should try to. I have all the stuff to paint and I was just going to give it to my daughter for her birthday. Hmmm? I think I'll get her her own then she won't feel bad taking mine away. My brushes have been with me forever, she needs her own.

    Western Washington? Near Seattle and/or Tuckwilla? I lived in Oregon for about a year when I got divorced. I remember there wasn't snow there, but the rainy season lasted a long time! Thanks again for the encouragement.

  • I say "go for it" with the painting. You never know until you try. Hopefully it will bring joy rather than frustration. My mom lived in Syracuseyears ago. Tons of snow. She lives near me now, about 2hrs from Seattle. Heard of Port Townsend? Not far from there. But used to live about 20min from Tukwila. 😊And yes, ☔️, ☔️, ☔️ here now.

  • What name do you write under Jeannie? Congratulations on you writing a novel. Can I get it on my kindle? I pray that both you and Tutu can get back into writing again, even if it is short stories and do a collection of them. It will give you both some self worth again. Gods blessings on you both, Jimeka

  • Thank you, Jimeka.

  • Hi everybody !!!! I'm on my way out the door, for wait for the surprise....a Doctor's appt. I know many of you haven't heard about such things,( ha ha ha ) but when I return I'll get right back to the "site" !!! Until then, THANK YOU ALL for the replies, I can't wait to respond to them all !!!!!!!!!!!!!!!!!!!!!!!! Suzanne/Me

  • I dealt with this when I was originally diagnosed. I used to see the "face" and ask them to repeat back to me what I just said. Very amusing.

    To avoid the cognitive issues this is how I've managed:

    1. Listen to yourself speak.

    2. Speak slowly so you can listen to yourself speak.

    3. Listen to the reply and stop the speaker if they are speaking too fast or you can't process what they are saying

    4. Always be upfront and say something like,

    "I really enjoy this conversation, can you speak facing me so there are no distractions"

    I find others really want to be heard and are more than willing to cater to a captive audience. Start by being a good listener for those cognitive issues. If you can't remember the question you wanted to ask, don't worry, just listen. If you can't remember er what you were saying or where you were headed, they won't notice and will chime in....so listen

    I hope this helps

  • Welcome, Me63! You've found an empathetic group of compassionate friends here. Our family and friends listen, love, and do their very best to listen to our latest symptom complaints, but unless they have MS, they really can't understand. I'm 58, married, a mom and gramma. I was 33 when MS first introduced itself to me. I had never even heard of MS! I have some physical problems, but the cognitive ones bother me the most. Those, along with the fatigue (and I would add pain for those who suffer that) are invisible and so hard to explain to those who don't have MS. Are you able to get out and around? Isolation isn't good, especially when depression is involved. But depression can be a complicated monster too...We're here for you, ready and willing to listen, encourage and even join in a pity party when we, ourselves, are down. So sorry you have MS, but happy you've found us!

  • Welcome

  • Keep typing then you can read what you were saying and take the time to reorganize your thoughts and make lists, I bought a boogie board to scribble my daily to-do lists so I can remember what I wanted to get done, it makes me a little more productive.

  • Wow there are more people here than I realized that are just like me! Bless you all and know you're all better than MS. You're all fantastic with all the knowledge I've learned here! Be the MS fighter you hide inside : ) <3

    (BTW: Again I lost where I was going with this, but I know you all understand hahaha)

  • Hello Me63 i am MSFighter and I would like to welcome you to our chat room and our family. You are correct, you found the right place. We have a lot of great people here and we treat everyone like family. You're just a couple years younger than I am. I'm 57 and I've had MS for almost 20 years now. I guess one of my biggest problems is my balance and I also have cognitive issues but welcome to the world of MS. Haha! What I do to try to keep my brain as sharp as I can is I play a lot of games on my notebook. I play solitaire, do word finds, put together puzzles, play Scramble, and play a game called Crazy Jacks. There are tons more of ideas if you simply research ways to prevent decline in cognitive abilities. Whatever you do you can't isolate yourself. You're correct in that. You are now part of our family and we need you. You can stay busy with us every day for a couple of hours. There are many, many posts that you can reply to and be a part of. And while you're doing all this you will be working on your cognitive issues without even realizing it. And we win because we have another wonderful person being a part of our chat room and our community. Remember together we are stronger. I invite you to become our newest MS Warrior. And as an MS Warrior we never give up and we never give in. We fight on MS Warrior, fight on!

  • Welcome to the group. I wish you the best with Lemtrada. My friend also did the 1st dose. He has seen some improvement already. It will take some time. Don't over do it & you will be fine. The monkey thing will come back (sometimes we forget cause we are not really interested). That's what I tell myself.

  • This is the 1st time anyone mentioned isolation. I just felt too busy, too tired, too frustrated and any other toos. I have been feeling like everything and everyone is just too much trouble. No wonder I feel alone and depressed.

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