Since we're friends sharing the same illness, why not start with everyone posting where they're from in the world; as well as, how long have been diagnosed with MS?
Where's everyone located?: Since we're... - My MSAA Community
Where's everyone located?
Written by
Aldasia1
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125 Replies
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I live in Virginia. I was diagnosed October 2006.
Hi Aldasia1 Great idea you have. I like it. I live in Brooklyn Park Mn. It's a suburb of Minneapolis.
I was diagnosed with MS in Sept 2007. After my dx and a lot of research and reading I realized I've probably had it since 1988. I think when I started my current job in 2002 due to the extreme stress it set off a downhill decline. That's just my theory though.
KrittyKat60 , hi, how are you? I'm live in Louisiana, and I was diagnosed November 2010. I was devastated when I received my diagnosis because I was serving in the Army at the height of my career; as well as, I had just purchased a new home and ready to continue traveling the world.
Hi Aldasia1 - good morning. I'm ready to go to work shortly. It's 5:45 am where I m at right now. I had a horrible restless night of sleep. My right leg and hip ached all night and when I try to sleep on my left side it's my shoulder that hurts. What a life. LOL But I'll survive the day I'm sure it'll be hard to stay alert. If nothing else I'll go home early if needed. I was dx when I was 50 yrs old the same year my youngest graduated. I could hardly wait for that day so I could be done raising kids and planned to travel by vehicle to as many places as possible. Had to take a 190 degree turn and that's when my life and plans changed. I was in denial at first but once I learned what I had and how to deal with it I did OK. Until they found new lesions on my spine from an MRI in April 2013 when they read the results, the same morning my Sister passed away. A day I shall never forget. 😢 Prior to 2012 ihasno pain mostly fatigue. Now I have both. Well I'm off to work now. It's about 39 degrees this morning gotta go warm up the engine before I shove off. Have an awesome day!! 😜
KrittyKat60 , I understand how you feel, and I hope your day gets better. I ache sometimes too, but I use frankincense mixed with sesame oils; so that, it cuts down on the scent cause I've gone around others and it bothers them. But, I love it because it stops my aches and pains in a matter of seconds, and I've been teased saying it's a placebo, and it's not at all! It really works, and I advice you to try it!
As far as my acceptance of the illness, I haven't and I won't because my FAITH won't allow me to do so, because I BELIEVE AND KNOW GOD is gonna HEAL ME AND US of this illness on this side!! Again Krittykat60 enjoy your day!!
Aldasia1
I've never heard of frankincense. Where do you buy it at? Who cares if it's placebo as long as it works right?
KrittyKat60 , I got mine from a friend, but it's also sold online at Amazon or Dr.Josh Axe( it has to be pure essential oil). I mix sesame and frankincense oils together, so that, I can give myself daily massages.
I'm from Texas and I was diagnosed back in '01 so 15 years ago.
Hi Aldasia1, I live in the uk, I was diagnosed in October 2010, PPMS, merry Christmas 🎄, blessings Jimeka
I live in Michigan, dx 2009
Where in mich? Im from sterling heights
I live in Arkansas, diagnosed March 2016.
I live in Lawrenceburg, KY, about halfway between Louisville and Lexington (the 2 biggest cities in KY).
OMG Agapepilgrim, it's ,Fancy1959. I live in Versailles Kentucky not 10 minutes away from Lawrenceburg Kentucky. Howdy neighbor! It's a small small world after all. At least that's what Walt Disney used to say. Haha!
Fancy1959 my favorite ride at Disney world "it's a small world after all!" Used to take our 3 girls there, then the grandkids, then in 2012 a friend who had never been out of KY! I was being pushed in a wheelchair during that trip though!! Maybe we can meet for coffe sometime - or tea - or an organic salad, or a whatever we can eat!! Lol keep in touvh
You bet neighbor. Lunch sounds just fine after we make sure there's no winter weather coming our way.
Marion, Indiana
Belgium, 2013.
Suburb of Orlando Fl, diagnosed 2008. First symptoms likely 1986
Yuma, AZ. MS began in 74, MS severe 1981, finally a diagnosis ~1985, Dr's were reluctant to tell patients they had a disease with no cure
in reply to
I have SPMS -Secondary Progressive MS
Ireland. Diagnosed this year. On copaxone, aged 63.
starlight5 , I'm in Louisiana,and I was diagnosed November 2010.
Howdy, folks! 😁
I'm in Newport News, VA.
Jesmcd2CommunityAmbassador
Great idea Aldasia1 l West dx'ed Mar '15 and live in Allegheny County, NY.
I would like to give you all a hint. If you put a @ in front of the name of the post, with no spaces, they will get notified. ie @ jesmc2 but with no spaces.
Thanks. ☺
It's wonderful to see so many new faces here. And from so many places. 😁
Jes🎄
Aldasia1 My name is Judi, I'm 52 and live in Sycamore Illinois. I was diagnosed August 2026,
Good Morning, Everyone!
I was diagnosed just before Thanksgiving in 2008, but had the symptoms long before that. Fibromyalgia was the dumpster name that all of my symptoms fell into before the MS diagnosis.
Born in Chicago, I now enjoy life in Manitowoc, WI! Can't wait to find out where everyone else is from!
Merry Christmas!
AngieRowe in reply to
Hidden ditto the fibromyalgia! Mine was called fibro for 10 years until I changed doctors! My doc wouldnt move from fibro and I went from walking to walker with fibro diagnosis !!!
agapepilgrim in reply to
Hidden fibromyalgua was the dumpster diagnosis all the docs used on me for 20 years. So frustrating!!! Now they 50 years (temp blindness at 17) and many strange symptoms dx as everything but MS until 6/6/16. Mostly treated for fibromyalgia and COPD. I have no confidence in foctors
Virginia DX 2001
Hi! From NY. Living in SC. Dx June 2014.
Columbus, Ohio. Diagnosed almost 2 years ago.. I'm 25.
Wow, we certainly have members from all over in this community! Welcome to anyone new! Feel free to look around, ask a question, or start a new conversation. We have two wonderful community ambassadors Jesmcd2 and Fancy1959 who are doing a great job of making everyone feel welcome here!
-Kaitlyn, MSAA
Live in Knoxville Tennessee (USA) but born in Birmingham Alabama. First symptoms 1977, diagnosed in around 1987..
I live in Maryland, close to Baltimore. DX in July 2016. Probably started in 2005.
Hello all. Seasons Greetings . I live in Kent, Ohio US and was diagnosed in 1997 at 30 . Didn't medicate until my 40s.
Hey everyone! Texas here. Diagnosed in 2013.
Hello all! Norfolk, VA here. Diagnosed this June 2016. @KrittyKat60 I found out the same way you did. My 20 yr old babyboy's best friend, might as well have been brothers, was murdered the morning of the day I was diagnosed. My head's been spinning since! I also have the same pain issues when sleeping. Almost exactly the same! Amitriptyline has helped a LOT! Been having symptoms back to 1996. Pursued specialist after specialist for the last 7 yrs as symptoms worsened. @MarciaD I too was diagnosed w/ Fibromyalgia earlier this year before getting the MS dx. Actually happy its NOT Fibro....
cassielynn71 So sorry for your loss! I'm sure that did not help with your illness,
cassielynn71
Wow I'm sorry to hear about your son. Gosh if I lost one of my kids they may as well put me on the paddy wagon. 😰😰 I don't think I could recover from that. My sister had what they call an anoxic brain injury from lack of oxygen to her brain. But to this day it haunts me...I know she could hear me and if they had given her a chance to recover she would have come back to us. Her kids didn't want to be bothered so they took her off the oxygen and she was breathing on her own. Then they put her in hospice, took her off the liquids they were feeding her intravenously. She lived for 2 more weeks, they basically starved her to death. And my friend lived alone and was dead in her house for 2 months with her little dog there. They had to identify her by her dental records. I was told I was prob the last person to talk to her. It was March 6th and I just had a strange feeling that came over me when we ended our call. She always followed up with an email the next day saying how great it was to talk again but I never heard from her. I sent several emails and called and left her messages. After about 4 weeks I started to search the obits and nothing in there. She was all alone dead in her house for two months before someone found her. It still makes me nauseous when I think about that. I ask her everyday to look out for me especially on days I have a harder time or going through something emotionally. She was a true catholic and she used to pray for me. I grew up catholic but I don't practice Catholicism. I go to the church my son works at, it's a non-denomination type of church. But I don't get to go very often. He and his family are very involved. They have awesome stuff for the kids. My grandkids love to go.
KrittyKat60 he wasn't MY son. He was my son's best friend. And LIKE a son to me. He came to dinner regularly. Spend the night too many times to count. It's been devastating to both families. We (his Mom & brother, dozens of his friends and us) get together once a month in memory of him and we just had what would've been his 20th birthday party last week. The authorities have one of his killer's in custody (a juvenile) and are working on charging another (an adult). Anyway....I can kind of relate about your sister. I too lost my sister. Last yr. Sept 2015. We had to make the tough decision to pull her life support and then watched her die for 6 days. She wasn't getting anymore IV fluids or nourishment because it would have prolonged it. It was the most horrific thing I've been through to this day. We can euthanize animals when they are in pain and can't be saved, because it's humane.......So yah, I sort of understand......But your neighbor???? Oh my goodness....You have been through it all, huh? I am so sorry that you've had to cope w/ all of that. You're strong though, because you are still here and fighting 
cassielynn71 hi yes I understood it was not your son. Doesn't matter if he was like family he's family. I have lots of adopted kids throu my kids. They all call me Mom. When my kids were growing up my house was the place to be. Everyone hung out here. They still do. LOL. Now my grandkids all want to hang out here. 😜 It's funny because I don't care really, I like company but due to having MS and the fatigue I do have limits. My house has a revolving door and that's great they all like to gather here. At least when they were teenagers I knew where they were at my house and what they were doing. It's tough to lose our loved ones and for me, I gave a hard time getting past it. Then they come visit me in my dreams. Not always but sometimes they do and it scares the c** out of me. I was close to my sister and my brother who I lost in 2010. I come from a big family. 10 brothers and 2 sisters. I'm the middle #7. I used to be close to all of them until they started using me and my husband. Mostly my husband. He was the bank as far as they were concerned. A few years ago I put a stop to it. Now I'm called all kinds of things. One of the nicer words is "greedy" the rest are not in good taste to post on here. LOL After my Dad passed away in July the family totally divided. The man had nothing but property but they all fought over it. My Dad owed us a 12 year old debt and b/cuz he waited so long to do anything about it I told him the only way at this point to settle the debt was if he did a TODD to settle it before he passed away. Otherwise everything will go to probate and no one will get anything. He called me back 2 days later begging us to come up there to discuss the matter. He told me he loved me so much and didn't want to die knowing it wasn't taken care of. I saved his voice messages. I won't ever get rid of them. As soon as he knew those papers were signed and filed he wanted to go. He lasted 10 days and then gone. I carry a lot of guilt for that even though I know he's in a better place and no longer in pain. My Mom was 60 when I lost her. That was in April, 1988. And I still miss her. Lots of heartache. Thanks for saying I'm strong. I don't always feel very strong. But I'm getting back on track now. Or I feel like I am. You will too. Time doesn't really heal but it does dullen the pain over the years. I'm really sorry for your loss and I hope you find some peace. I'm still looking for it. We'll get there.
KrittyKat60 we are so alike in so many of our life situations........kids hanging at the house and everything. I do still have my Mom. She is my source of strength. She's been living with Fibro since before it was a "real" thing. I've learned a lot abt strength from her....and I see I'll learn from u as well! Thank u so much for sharing ur life with me....us!
cassielynn71
You're welcome. Yes it seems we do have a lot in common. If I could I would have my kids and thier family's live with me foever. I didn't have a family so I could wait till they turned 18 and tell them you have to move out now cuz you're an adult. I enjoy my kids and thier families as well as thier friends. People used to tell me I should be charging them rent to live at home. I'm like, "Why I still have to pay the mortgage and bills? Why would I charge my own family to live in thier own home?"
I look forward to getting to know you as well and share our history. My Mom had lung cancer and was taken from me too soon. I was 31 when she passed away. She was one tough lady and I've been told by many I'm more like her than I even realized. And lately several have told me I even look more like her as I get older. Who would have thought? Haaa
Salt Lake City, UT here though Originally from Washington State. DX 2012 but symptoms since late 1980's or early 1990's.
Born in Kalamazoo, MI, lived in Marion, Indiana for a couple of years, but have lived in Southern California since 1970. I was Do in Feb 2013. Neurologist estimates I have had it for over 20 years due to the number and size of lesions.
I live in central Maine and was dx 19 months ago at age 65. I had been diagnosed with essential tremor and had tremors of the hands, head, and voice, as well as balance issues which could also be attributed to the tremor. MS was not on the radar pre-MRI. What a shock that was!
Hey now. I live in Niceville, Florida. Yes...it's a nice place to live, with nice weather, a nice lower cost of living, and many other nice categories. Diagnosed in May 2011, a review of my medical records revealed I'd been reporting symptoms of MS since 1998. The misdiagnosis was understandable, as it appeared to be sciatic nerve problems, causing "numbness and tingling in the lower extremities". Thanks for opening the topic of locations. Great idea.
cassielynn71 in reply to
I used to live in Niceville. For about a year. I still have some family there!
agapepilgrim in reply to
Hidden my nephew and family live in Niceville. I used to visit once a year but too far from KY now. They are both in Air Force. Nice town! I love the beach.
Hate to brag guys, but Phoenix, Arizona is pushing 70 degrees today! Thanks to two growing seasons, my second crop of cherry tomatoes is ready to harvest. I was DX in 1988 and even though I have moved into SP I still have a good quality of life and so can you!
I am a MI transplant to NC now. I love it here and was diagnosed in July of 1982 and am now on 3 days a week 40 mg of copaxone. Am doing great.
Chicago July 2013 1st relapse February 2015.
I live in Solon Ohio, in NE Ohio. I was diagnosed with MS in Nov. 2007 and PPMS inApril 2008.
Is Solon near South Solon? We drive through it on Friday nights going to Mount Sterling.
Ashdown, Arkansas
G'day mate, I'm in central Victoria, Australia. Have a good one.
Hi Aldasia, what a great idea you brought to us! You created a mental map of the world with a star marking each person who has replied! As for me, I am currently in So California, returning next year to central Virginia. First serious MS exacerbation in 1989, diagnosed SPMS in 2010.
Born in Warren, OH. Have lived in SC for 30 years. Dx in 2014 at age 51.
Good Morning (so far anyway!😉). I am originally from Elwood City, PA, lived in NYC for a few years, went BACK to PA and have been living in Texas for the past 31 years! I was "officially" diagnosed with MS in January of 2014 at the age of 52, though my doctor believes I've had MS for several years prior to my diagnosis. About 8 months after my dx in 2014 I had 2 seizures a week apart. The seizures were due to change in medication. The first happened while I was taking a physical for a new job....at a HOSPITAL! 😋 Luckily I just dislocated my left shoulder. Then a week later I was at home and had another one. I don't remember much about the next month....I shattered my right shoulder (and of course I'm right handed!😬). My shoulder had to be replaced, I ended up with blood clots in each lung, which put me in ICU for a week. I do remember the pain...but thank goodness for pain medicine!👍🏻 My physical therapy was delayed due to other complications. After several months of therapy I now have very limited range of motion (can't even raise my arm up to shave! 🤣). And the pain NEVER stops! And then there's my back....since childhood I have fallen (usually on icy ground) on by butt more times than I can remember! There's been 3 MAJOR falls in past (a horse riding fall, a BAD fall on ice in a parking lot, and then a STUPID one involving my 50th birthday, too much tequila, a cement dance floor & a REALLY bad dance move!🙄 which resulted in a compression fracture (Happy Birthday to me!😁). Like my shoulder, the pain NEVER stops!
Oh, and if all of THAT isn't enough to deal with, here's some more issues...
My husband worked in the financial industry. He's had 2 jobs in the last 27 years. His degree is in finance. To make a very, VERY long (and complicated) story short, my husband was forced to resign from his CEO job of the past 16 years because of greedy, unscrupulous and vengeful people. We had a winning case....until our money ran out (savings, retirement, etc.). My husband is a good man...and I'm not just saying that because I'm married to him. ANYONE who knows him will tell you the same thing! Except the people who employed him over the last 27 years! So you can imagine how hard (just about impossible) it is to get a job WITHOUT references! This all happened in September of 2012. He finally got a job delivering propane last year. And because one of his lawyers told him he couldn't collect unemployment benefits if he was suing his employer, he didn't. And because of his character he refuses to file bankruptcy. We're struggling to pay what we owe...but those debts were made when we had a much higher level of income. But there's no brownie points for trying! And as if ALL of this wasn't enough, we had to sell our home & move in with my mother-in-law! My father-in-law had just passed away, and she has MANY health issues! So now I take care of her 24/7. It's been so very, very hard! I can't even take care of myself when I'm hurting or the fatigue hits (which is daily). My symptoms are getting worse...but there isn't another option at this point. We only have to pay for groceries. She doesn't charge us for rent or utilities. I take care of all the household stuff & my husband takes care of the outside things (her house sits on an acre of land). In June my car "drowned" after I drove into a flooded intersection during a rain storm. It's kind of funny because I had been praying and asking God to help us with our finances! Well He did! That saved us $600 a month! But now I'm without a car! 😝
I try to stay positive...my faith helps! 🙏🏻
But sometimes I just want to scream & throw a temper tantrum...some days are almost unbearable! I can only pray that 2017 will be a better year! 😊
Hope y'all have a blessed & wonderful Christmas!❤
carolelesly i agree 2017 must be better because like you 2016 was pretty the worst year of my life. I used to pray a lot but since 6/6:16, I try kneeling and all I do is cry and get angry at His will. Eventually I make it through the day only to toss and tut through the getting no sleep. Gotta get up in 6 hours to prepare to feed again the medical giant! We had no choice but to file bankruptcy 5 yrs ago just to keep s roof over our heads. So very humiliating!!! I said I would never do that. I am doing a lot of things the past 8 yrs that I thought I wouldn't do until I reached my 90's like my mother, I have faith God knows we,I am doing my best with what working nerves I have left, si I am thankful for his grace. It is sufficient It hurts that the people I thought were my friends have backed away because they think I "blame everything on MS" and should try harder and believe God will help me. Well, I have started the hand tremors sign off for now.
It hurts so much when the people who care about the most and who we think care about us don't "get it"!
As if we don't struggle enough, trying to stay positive, trying to work through pain, keep up with the daily responsibilities and TRY to find joy in life again. Couple all of that with loved ones/friends who don't understand (or won't even TRY to understand) what we're going through & faced with long term, and you've got a recipe for heartache that cuts a HUGE whole in our already fragile heart!
My faith keeps me going most of the time. Sometimes I get angry with God because of ALL the issues my family & I face! It's like " REALLY Lord?!?!" But then I regroup & continue on.
There's so much I was looking forward to at this stage of my life...ESPECIALLY my grandchildren! They're the light of my life!
I guess we just need to take each day as it comes, and be thankful we HAVE another day!
Hang in there Agapepilgrim! You can talk to me any time! I'm sorry it took me so long to reply...Christmas was crazy! But I will check in every couple of days.
Happy 2017!!!❤👏🏻👏🏻👏🏻🍾😃
carolelesly Br thankful "Christmas was crazy." Even though we have 3 children, 9 grandchildren, 10 greatgranchildren, we did not wrap one gift or unwrap one gift. so that makes it almost just another day. I did splurge and buy a free range chicken and make a special cheese ball that I could eat for as treats for others, but our grown children are scattered, and none come home, and it is just too painful to travel to more. I didn't even send out cards for the first time. My husband did put up our tree, with just the lights. It was so quite, and nothing buy a foggy memory now. I supose that is growing old. Thank God for lots of blessed, loving memories, though.
Jesmcd2CommunityAmbassador
carolelesly tequila. ~sigh~ Oh wait you talked about other thing to.☺ Welcome to the site. So sorry it's for this dreaded monster tho. Sounds like it hit you with a Mac truck.😞
You have alot on your plate, l don't know how you handle it all. Just please remember that you need time also. And try to take breakes. I know when l do any cleaning it gets done in shifts. If it doesn't get done today, it will be there tomorrow. (As long as my OCD doesn't act up. 😕) But l don't pay the price the next day.
As you can tell from alot of posts we talk about pretty much anything and everything. But most of all Support each other! And this is a pretty safe place to vent.☺
Jes🎄
Thanks for the welcome Jesmcd2!
Still trying to figure out this site & how to reply & follow....I'm SO not a techno person!😋
I told my husband that 2017 was going to be different. I want to take an active role in helping myself deal with this wretched disease. For the last two years I have tried to ignore it and just go about life as usual. I'm a very type a person that has many OCD issues. Not medically diagnosed, but it doesn't take a genius to figure out if you have some type of OCD issues ( like having all of your dishes, silverware arranged a certain way. Or all of the bath towels have to be folded exactly the same way. Or when you clean, you CLEAN! I'm talking get a toothbrush and scrub every nook and cranny type of cleaning !😁). My idea of utopia is having my house completely cleaned top to bottom and everything organized where it should be! Keep dreaming, right?!👍🏻
I'm trying my best to take it easy when I can, but it's hard when your schedule revolves around somebody else's. I love my MIL (mother-in-law)! But she is very difficult to take care of! She could do some things for herself, but she won't. The main problem is that she WILL NOT take her blood sugars & rx's when she KNOWS when they're due! She gets sick about every 2-3 weeks & ends up in the hospital. Both of her daughters moved away so they wouldn't have to deal with it (more to all of that, but it's about the gist of it). She sees SIX doctors!!! And I'm the chauffeur! It gets old. I finally said I had enough...the daughter who lives closest (3hours away), was diagnosed with uterine cancer a few months ago. My MIL has gone to her house several times to "help" her daughter only to wind up getting sick & coming home (twice) or ended up in the hospital there & then 3weeks of rehab (once), or just coming home sick (Twice)! It's enough to drive a person to drink! My SIL is very sick & unable to do much. Guess where she is this week? She's here!!! 😬 Who gets to take care of them? ME! And I just got back from the doctors after suffering major hip pain that has been so bad I can hardly walk since last Thursday! I REALLY try to stay upbeat & positive!!! I'm hoping just chatting with others on here will help! Actually, I think it already has!😃
Thanks for the ear! May you have a wonderful & BLESSED 2017!
❤😃👏🏻🍾🙏🏻🌈
And you have MS on top of it all? Bless your heart carolelesly . You have alot on your plate and sounds like you might need to have a heart to heart talk with your MIL and husband. Explain to them that you can't do it all and they HAVE to help. Your going to run yourself right into the hospital yourself.
I have to say my OCD is not that bad 😅 cause l have learned to let things go if l need to. That, and if l don't look at it, it doesn't exist.😅😅😅 Although my Christmas tree and decorations are starting to drive me nuts. 😑 Not sure if they are going to make it till the 1st. 😅😅
Hang in there and jump in anywhere! Helpful hint... If you put an @ in front of a person's name with no spaces. They will get a notice.☺ ie @ jesmcd2 but no spaces 😊
Jes🎉
Well I hate to burst everybody's bubble but so far I think Agapepilgrim, who lives in Lawrenceburg Kentucky and I, Fancy1959, who lives in Versailles Kentucky take the prize for living the closest together. (LOL 😁) We never met before we started chatting back and forth in this chat room but it turns out we live about 10-15 minutes from each other in Central kentucky. That's just amazing. What a small world we live in live in.😂😄😆😎😉
Oh and I forgot to tell everyone I was officially diagnosed in August of 2012 but my neurologist figured from the amount of lesions I had in my brain and on my spinal cord and from the disability I had that I had had MS already for 10 - 15 years. Yuck.......😯
Fancy1959 hey I just remembered I have strict orders to start water arebocis. The closet warm water therapy gym is in.....drum roll please...,, versaillles! Falling springs community center! Have you been there? Go there? Their warm water classes are on tues and Thur mornings. After the holidays I be able to talk my husband to going. And you can go too!!!
Yup, my youngest son was a lifeguard there for the past 3 years 2 of those being a senior guard. He also swam competitively for Woodford County for 6 years..... So, yes, I spent quite a few hours at the Woodford County Aquatic Center.
Fancy1959 gotta see how gas fits in budget. Dr Twyman had me going to 3 docs last week. Ruins our gas budget. He's my new neurologist. Saw him first time 12/2. Stopped my Aubagio due to severe bronchitis. Now on 4 meds to clear that up before he will put me on another preventive progressive med orvwhstevermerry chridtmss
Good idea Aldasia1! I'm currently living in Pittsburgh, PA, USA and I was diagnosed with progressive MS when I was in Indianapolis in 1986, 30 years ago. I was able to continue leading research and development efforts in biotechnology until 1999. So I've been on long term disability leave since 2000.
I'm in Oregon, but lived for 43 years in Illinois. Dx this September at age 57. I'm not on treatment yet because insurance refused coverage. I guess I start the lengthy process of figuring all this out.
Hi I'm Ellen. I'm from Rochester, Ny. Diagnosed Oct. 2005 at age 57. I have a daughter diagnosed in 2002. She was just about 20 at the time.
Jesmcd2CommunityAmbassador
itasara l didn't know your from Rochester your about 2hrs north of me 😊
Hope you enjoyed your holiday
Love Jes🎄
Good morning everyone! Hope everyone had a merry Christmas!! I'm from Mississippi, diagnosed in 2009, didn't accept it until this year after getting 2nd opinion.
TLeannM what made you decide to get your 2nd opinion this yr? And what is your Neuro giving you?
Jes🎄🎉
ps l hope you had a wonderful holiday 😊
When I initially got sick, right side of face going numb, vomiting, double vision, tongue numb, couldn't hear out of right ear. It affected the whole right side of my body. This all happened within 30 minutes. I went to ER and they sent me home with migraine and two days later, it had gotten worse. Went back to ER and they admitted me for spinal meningitis and encephalitis. After a year of tests, they came back and said it was MS all along. Anyways to make a long story short. I guess I held onto the idea it was spinal meningitis instead of being diagnosed with MS. After seeing the dr for the 2nd opinion. She pointed out a lot of things that no one else had told me. I'm taking the gilenya pill. I tried copaxone the first time. I hated it!! The injections hurt, left dents in my skin. Plus me not agreeing with the MS idea, it was easy for me to take myself off. I've been on gilenya for a month now. Some days are good and some days I feel strange. Can't really explain it. She also put me on modafinil for the fatigue. I've really enjoyed it. Hope this helps.
TLeannM , I'm happy to read your doctors finally realized your issue. However, I understand how you feel about injections because I didn't like it either when I was on Betaseron and Avonex.
You'd also mentioned your doctor prescribing you modafinil for fatigue, and it helps a bunch! In addition to modafinil, I suggest you check out B12, Omega3 with fish oil, and Vitamin D3 ( research the benefits of each ) vitamins as well. Oh, don't forget about stretching and exercising too cause they'll help with fatigue also.
Hi, I'm in the U.K. and was diagnosed 6 weeks ago.
Born and raised in So CA, presently living in WA State. Diagnosed in 2000, but first relapse in 1991.
Elyria, Ohio. Diagnosed April 2016
Good question. I was wondering the same thing. I live in Portland, Oregon and I was diagnosed in March of 2011.
I am from Marshall, TX and have had MS since 2013 but diagnosed in March 2014
Originally from Boston, lived in Yorkshire UK for 32 years, but now live in Montana.. Diagnosed Oct 2016, but 1st probable attack in late 90's.
Hi pmb evac. How come you didn't come back to Boston. You've missed out on so many Celebrations because of our incredible Sports Teams. Especially the Patriots do you still root for boston teams
Hi @tombouy46,
Settled here because it is my wife's home town and we bought property here about 10 years ago so when we moved from England in 2015 it was an obvious place to settle.
Absolutely I still avidly follow the Sox & Patriots... Pats & Sox emblems on the back of my truck (License plate "REDSOX2")... Bruins & Celtics not so much. Being a Patriots fan here in what is Broncos country is a bit tough, but I still fly the colors. The Sox don't have any natural enemies here - Rockies are NL and the Mariners don't really have much of a following even though they are the closest AL team. My family attend all the duck boat parades and send me photos.
There is a Pioneer league farm team from the Reds (BIllings Mustangs) here that is a lot of fun to watch.
I take it you are form the area? I'm actually from Weymouth & Pembroke but no one outside the area would know where that is so I say Boston.
Wow. That's to funny. I live in weymouth. I grew up in Braintree that's awesome. A hometown boy. Where in weymouth did you live. Not sure how long ago you have been in the area but so many changes everywhere over the yrs. It's kind of sad and pathetic. I'm the type of person that doesn't like change. People call me old fashioned that's ok that's me. I now live on broad st in weymouth. In an apt bldg for the elderly and disabled I'm 57. So it's not the elderly in me yet. Lol.
Small world. When I was born (1959) we lived in the projects (low income housing) on the shore of Whitmans pond on Memorial Drive - I think they are now posher apartments. When I started 2nd grade we moved to Birchbrow ave, on Kings Cove across form the Fore River Bridge, which is in the throws of being replaced I believe... Then to Pembroke in jr high. After I graduated from Silver Lake I went into the Army in 77 & I haven't lived in Mass since. Visited a lot to visit family over the last 40 years.
Broad St in East Weymouth? My Dad (Firefighter) was stationed at the station on Broad ST. Spent a bit of time at that station.
I am in Jackson, MI and was diagnosed almost 11 years ago after having a spinal tap
Slovenija diagnosed 2004 i was 18
Cunning Ga. Diagnosed April 2017.
I was diagnosed June 2004, Boston, Massachusetts. I do have to say I knew I had MS at least for 5 years if not longer.
Cunning Ga. Diagnosed April 11 2017.
Living in Xenia, Ohio. Diagnosed this week.
Hi Aldisia. I'm from Massachusetts, just outside of Boston. And I live for our New England Patriots, New Season starting soon. AMEN TO THAT
Hi Aldisia, I am ssdw I am from the North Shore of Massachusetts I also love the Pat's. I was diagnosed with MS 2004 but I New I had it earlier on 9-11-01 it started to show by my right eye I had a blind spot, you know how a cats eye is up and down that's how my eye was blind. You see my husband worked at Logan Airport, Boston. Let me tell you that my stress level was up there. He was not physically hurt but the stress of everything it was not good. My doctor I had didn't listen to me and it took three years for me to tell him I have either have MS or lime disease lucky me not I had MS.
Hi ssdw. I'm from the south Shore. Live in weymouth. So if I'm reading your message right. You didn't tell your husband for 3 yrs about your illness or the symptoms of your illness. Before I write anything else. Please let me know if I have it right so far
Weymouth? born @ the South Shore Hospital & raised in North Weymouth, Birchbrow Ave right on Kings Cove, till Jr High then moved to Pembroke.
I lived on bluff Rd for a couple of yrs with my grandparents right next to Billy Budds sub shop. My grandmother actually taught gym at Bicknell for about 30 yrs. Dam. What a small world
I went to Bicknell for 7th grade... Just a short walk from home... Bluff rd - wasn't there a McDonalds on the corner of Bridge st & Bluff rd ?
Went to my uncle's birthday party in November last year and my brother & I went by the old house on Birchbrow... Place is all different than when we grew up. I think Bicknell is now housing and Johnson elementary is not a public school anymore. Cain's seafood restauraunt is gone (the sponsered a little league team I played on & was the place my folks had their wedding reception at in 57)... Used to fish off the coal pier (when they made electricity with coal at the old Edison plant) and take our boat out into the harbor past Hull & Nantasket fishing... Wow that was a long time ago...
Thanks for dredging up the memories!
I had been letting my husband know how I was feeling and he would say to go to the doctor which I was but the doctor is the one who actually told me I was having woman problems, I had gone to an ophthalmologist and he was as dumb as my doctor. It is pretty bad when you end up googling your symptoms and you find out what you have that's the straw that broke the camel back was when. I saw that doctor i was having severe pains in my stomach area, I had my younger son (3yrs old) with me if I didn't I think I would have told that doctor off because that's when I changed my PCP and got an neurologist at Beth Israel Deconess Hospital and I was diagnosed with MS also having spinal tap multiple MRI's. That's why I tell people if you know something is wrong with your body and your doctor is fluffing you off find another doctor. I mean we live in Massachusetts and people come from all over the world to go to Boston hospitals. Ok I'll get out of this right now
But I feel as if I had a doctor who listen to me maybe I would be able too walk better, because I would have been diagnosed earlier.
I perfectly understand about the doctors. I had gone to the Emergency room at South Shore Hospital back in the early 80s. I had wicked tingling going down my right leg. I knew something wasn't right. After about 5 hours there. They told me I had a cold in my system. I must of been sitting in front of an air conditioner. And not to worry. It would go away in a few days. Well I ended up back at the ER about 2 weeks later. The tingling was going down both legs. Well within 20 mins they had me prepped for emergency surgery, they said I had a disc hitting my spine. Well they started to give me a milo gram and the needle broke off in my back. They said it was a defective needle. They ended up admitting me after a week I was sent into boston for all kinds of tests. A few days later I went home with no diagnoses, the neurologist from S.S. Hospital called me wanted me to meet him at his office he sat me down. He had all the records from ss hospital and mass general Hospital. He told me that with all the tests they did. I have MULTIPLE SCLEROSIS come back and see him in 6 months. Are you friggen kidding me you just told me I have M.S. and to come back in 6 months. Needless to say. I never went back to see him again. I found a fantastic Neurologist in 2004 I had to have a Baclofen Pump put in under the skin on my belly. I couldn't walk anymore because the spasms got so bad. I went from RRMS TO PRIMARY PROGRESSIVE M.S. I'm so sorry I made this message into a book. I started writing you a message. And all of a sudden my brain and memory just kept going. Dam it brought back so much stuff that I had forgotten about and anger towards the docs who messed up in the beginning. AGAIN I'M SO SORRY FOR RAMBLING ON SSDW
I have something to tell you never be sorry for saying what is on your mind because you should know we all have the same situation. No one believing you, especially a doctor I don't know about you but they took so many vials of blood then after having my spinal tap and that doctor final tell me I haveMS. Then that doctor retiring just my luck. We all have our tails to tell, see just like you I was going to say one thing and I got rambling.
We'll try try to have a good 😊 day I don't know about you but I was put on retirement and let me tell you it's not all it's cracked up to be.
Bye for now.
Hi. It's me again. I forgot to write when I was diagnosed, it was early 1980s. I was able to work full time until 2002. Then all hell broke loose as far as my Health I had to give up working. I ended up doing some Volunteer work at a food pantry. But I'm not able to do that anymore.
North of Detroit,Michigan, USA, The Mitten State. Diagnosed in 2011 but determined it started for me back in 1975.
Hello!! This is my very first post in the community. My name is Jacque, I live in OKC,OK USA. I used to be a Master's prepared ED RN (wait, I guess I still am, I just can't work any longer). I was diagnosed on May 19,1995, 1 month to the day of the OKC Murrah Building bombing. I had been having symptoms, such as trigeminal neuralgia at the age of 32, falling, breaking wrist watch faces due to falling into walls, etc. extreme fatigue, heat intolerance. cold intolerance. Y'all know what I'm talking about....I worked the ED in OKC on the day of the bombing and, of course, after my shift, I went home crying my eyes out. I cried about the loss of life, no way to help my patients understand what had happened, no way to make sense out of something so senseless. All that was on TV was 24/7 coverage of the rescue effort. I cried for a week. I went back to work 1 week after the bombing. The first night, I tried to stand up and my right leg felt as if it wasn't there, so I fell. Then a couple of days later, I was shopping and my right leg felt as if I was dragging an elephant behind me. I dropped by the ED to talk with the doctor about what was going on. She got me an appt. for the next day with a neurologist. He did MRI's which showed I had a demyelinating illness. That was the beginning of my story.......
East Tennessee, officially diagnosed 10/2016 but the doctors think it was woke up by a traumatic injury I had 6/13/2007.
CalfeeChickCommunityAmbassador
Aldasia1 Here I am, stuck in Lodi, CA. DX December 2016 at 68 yrs old. I totally missed this post because I was probably still spinning from test and getting diagnosis!
Toccoa Ga. dx April 2017 at 65 years old.
Hey y'all!! I am from a suburb of Oklahoma City, OK called Edmond. It is growing exponentially and is becoming a yucky traffic snarl. It is on the north side of Oklahoma City and has all kinds of fun, ritzy, and/or eclectic shops. I am a disabled Emergency Room Forensic RN for over 30 years. I have been disabled since 2/2/2010. I am disabled mainly due to the fatigue associated with MS. I just cannot stand on my feet for 12+ hours a day. Unfortunately, 12-hour shifts are about all the hospitals and clinics offer any more. I was diagnosed on May 19, 1995. I feel I've been really blessed to be able to continue in my career for 15 years post-diagnosis. It's been a while since I've been to this site I thought I might reintroduce myself in short form.
Hope all is well with everyone and that y'all have had a wonderful holiday season and that your New Year's resolution is to NOT exacerbate in 2018!!! Love to all, Jacque
Hi my name is Kathryn.. I am from New Jersey but I moved to Florida 10 years ago. I hope this message finds all of you in good spirits.
Hi Aldasia1, I am a native North Carolinian, and was diagnosed with
RRMS in 1982. Diagnosed with SPMS in 2007...currently live in Lexington, NC. Born and grew up in the mountains of NC, but I can't deal with the cold and the snow there!
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