I am new here would love to hear from you.

[Amore55]

I was diagnosed with ms 10 years ago. Just like most of us there good days and bad days. But I have a big supportive family. I live in Salt Lake City. I hope to hear from someone out there and get to know you. Talk to you soon!

[johnMSAA Partner]

Welcome to the community, @Amore55 ! We think you'll get a lot out of the respectful, informative, and engaging conversations on this platform.

I'm sure our other followers will be chiming in with their own welcomes shortly!

- John, MSAA

[WAshingtongirl]

Hi, amore55, and welcome! What a blessing it is to have a big supportive family! With MS, that really helps. I'm Dawn, but go by Tutu. (Actually, i'll answer to either 😉). Tutu is what my grandkids call me. I hope you visit here often. I love the atmosphere here, the laughter, honesty, the desire to help one another, and genuine budding friendships. I can't think of a more fitting month than November to express how thankful I am for everyone here. Welcome!

[Amore55 in reply to WAshingtongirl]

Hi TUTU! Thanks for welcoming me. How many grandkiddies do you have? We have 14 so far,they are great huh? I am so glad I found this site. It seems like no matter how many years since my diagnosis I still think of questions. Let's stay in touch. By the way my name is Kelly.

[WAshingtongirl in reply to Amore55]

14? Wow, you do have a big family and are so very blessed! We have 2 sons and 6 grandchildren. Grandkids are the best! Just wish I had more energy to have them over more often to play or sleep over. We had our 3 grandsons sleep over the night before last, and I'm still dragging-BIG TIME-today. If not for my husband and his help, there's no way I could do so on my own anymore. I look forward to chatting with you more, Kelly!

[Amore55 in reply to WAshingtongirl]

Hey Tutu! None of the grandkids were with me but they sure tease me about asking me if I feel like going bike shopping! I know what you mean about having more energy for them, I am always tired and have excruciating pain, so it's hard to play hard with them. We are both very lucky to have good husbands it sounds like. I do not know what I would do without my sweetie.

[WAshingtongirl in reply to Amore55]

Amen to that!

[Fancy1959]

Hello Amore55, this is from Fancy1959 and I am welcoming you to our awesome chat room! You have just found a safe place to ask questions to join in conversations and to belong to. We are a very supportive family here and we probably together could amass well over 200 years of experience with MS! That's a whole lot of hidden knowledge we have accumulated and do not even know we have until someone asked a question we know. I'm glad you reached out to us. If you're lonely or if you have any concers or questions we are just a post away. Some of our philosophy is that we are stronger together! I also invite you to become one of our newest MS Warriors. As a MS Warrior we never give in and we never give up. We just keep fighting this monster we have in common, MS! I hope to hear from you soon. Please stay in touch and feel free to answer any post you see that you can contribute to. Take care of yourself and talk to you soon!

[Amore55]

Hi Fancy, this is amore55, otherwise known as Kelly! I am so glad I found this site, you are so right it does feel like a family. How long since you were diagnosed? Me, ten years this month. Let's stay in touch. Thanks

[CalfeeChick CommunityAmbassador]

I'm Lynn, just diagnosed this summer and still adjusting to new life. Don't think I've settled in new "normal." I'm 68, before I went numb at end of June, I was very active person. Long distance bicyclist, Nana to 8. Love this chat site and have learned allot from others & MSAA

[Amore55 in reply to CalfeeChick]

Hi Lynn. Gosh you just barely got diagnosed. How are you doing? Do you have a lot of symptoms? Sorry, maybe too personal. I just remember how overwhelmed I was the first year or so. I'm 55 and was diagnosed 10 years ago. I am Nana to 14, 8 kids, 3 stepchildren. I have a ton of nasty symptoms,but keep fighting, determined to win. I've always been very athletic so I get frustrated sometimes. Enjoying getting to know you so much.

[CalfeeChick CommunityAmbassador in reply to Amore55]

Yes am new to all this and am learning so much of MS and the amazing people here on this site. I tell myself I've accepted diagnosis, but feel I'm still absorbing it all. Symptoms-started June 28 after dinner, tingling, burning right side of back. By 4am, numb all the way to tips of toes. Thought I'd had stroke, ER visit, no cause found. 2hrs later whole left side went numb. Went to ortho doc, X-rays &a MRI, no causes. Had to wait almost a month for Neuro appt. Brain MRI, a call to say MS and "You're 68, have had long life." Like I was to just sit still and accept. Got referred to UCSF MS Clinic and because of my age, they want to treat and follow me. Since then I've had brain, cervical and thoracic spine MRI's, with and without dye. Spinal tap, nerve conduction tests and 33 vials of blood drawn(not all at 1 time.) While waiting for all results, have had 2 rounds of high dose steroids, which has reduced numbness & tingling. My feet and backside feel like they are frozen. Have fatigue, but still try to swim or walk in pool at gym. This is 1st time I've typed it all out. All that in 4 months.

[WAshingtongirl in reply to CalfeeChick]

Wow, you really had a sudden/dramatic onset, Lynn. So glad you have an excellent MS Center nearby following you. But still, so scary. My very first symptom was a burning sensation on one side of my back. 'Moved' to one side of my face. Then the buzzing took its place. I had injured my back a few weeks before lifting a box of encyclopedias (I'm dating myself. Ha!) I was put on muscle relaxers and REALLY thought the weird sensations were a reaction to the meds. I had a good pcp who disagreed with me and immediately sent me to a neuro. Neuro was a jerk, but the next one wasn't. My heart goes out to you and others here still waiting. So sorry you still are 'numb' too. Praying for a firm answer soon.

[CalfeeChick CommunityAmbassador in reply to WAshingtongirl]

Wow, you have been through a lot too. At least we have found this chat site and there is so much experience and knowledge here. I am somewhat ashamed of how naïve and ignorant I was of MS and the suffering of all those that have it. Now I'm learning both personally and from the experiences of everyone here. Lynn

[Amore55 in reply to CalfeeChick]

Lynn, I probably would have suspected a stroke too. But I'm glad you finally got to the right facility. Have they talked about any disease modifying meds? I had novantrone, a harsh chemo for six months, then copaxone and have been on Tysabri for about 8 years. It was strange, my MRI in August showed no new lesions, but on August 12 I woke up in full relapse. My parents died 18 days apart in July and I think that stress finally hit me. They were married 72 years and my dad could not live without my mom. Anyway, I had been doing fabulous since January when I got on Ampyra,so to have ALL the tremors,pain,balance issues, etc again kind of stinks. But life is good. Lynn, I sure hope you feel better. Kelly

[CalfeeChick CommunityAmbassador in reply to Amore55]

Hi Kelly, first of all I want to say how sorry I am about losing your folks especially so close together. They must've had one heck of a love story 💖💖 sorry about your relapse I hope you pull out of it soon. Other than those steroids I had at first I've not had any treatments yet I have a long time before my next appointment which is not until December 19. I'm sure I'll have some treatment after that. My first doc wanted to start me on Tysabri but UCSF doc says no because I am positive for that JCV virus antibody. Feel better soon 💐

[Amore55 in reply to CalfeeChick]

Lynn, thanks for your kind words regarding my parents. It's amazing how different doctors see things. I've been on tysabri for years and have always been Jc positive. They draw my blood quarterly and make sure my Jc number is low. In fact probably eighty percent of the tysabri patients at my neuro are positive on tysabri according to my infusionist. But I am seriously considering changing to due to length of time on tysabri.I know they will present great choicesto you. I just always try to learn all I can, like we all do. Kelly

[Amore55 in reply to CalfeeChick]

Lynn, I hope I did not offend you when I mentioned that I am Jc positive, I was only showing how different docs are. The last thing I would ever want to do is hurt your feelings. Had a bad morning. Found out someone hackedour checking account for about 6000 dollars,so I spent the morning at the bank, now have to deal with a police report. Oh well. Talk to you soon. Kelly

[Amore55 in reply to CalfeeChick]

Lynn, I am sure you have gotten tons of info on your question. But I know they use something called the EDSS scale to determine disability. Kelly

[jimeka]

Hi Kelly, if you want to unload or have a laugh, or get information, you have definitely come to the right site. I have found everyone on here is very friendly, and normally someone knows the answer. We all have one thing in common, ms, we might not have the same type, but you get to realise how vast the symptoms are, so someone somewhere will have experienced it. I am sorry that you are in such pain, it's bad enough with the fatigue, without the pain. 14 grandchildren, wow, Christmas must be an exciting time. I have 3 children and 2 grandsons with another grandchild due in the new year. Grandchildren are such a blessing, tiring, but well worth it. Hang in there, Jimeka

[Amore55 in reply to jimeka]

Hi Jimena! Thanks for welcoming me to the site. Everyone is great aren't they? Yes Christmas can get crazy, but fun. I'm in Salt Lake City and of course everyone assumes I am Mormon, but I am not. Tell me about yourself if you would like, I am always interested in others experiences with this disease. Kelly

[jimeka in reply to Amore55]

Hi Kelly, was dx 6 years ago. I have PPMS. Have been very active all of my life, swimmer, mountain leader, snow and ice climber, skier, canoeist, sailer, pot holer, I did most things but sky dive, still can't do it. I trained as a teacher, ended up living in Canada for 12 years, where I was a fitness director, played squash, racquetball, soccer, aerobics, I was never still. I came back to the uk 28 years ago, married a local farmer, got back into horses, then14 years later had a bad fall which 8 years later they finally discovered that the fall had caused a disc to serate my spinal cord. So after a transthoraxic discectomy, 51 staples later, rib removal, it was rough, they told me I had ms . That same year on my way for a MRI we had a head on collision which caused me to have another disc removed from my neck, so I am now quarter of an inch shorter. But like most people on here you have to look forward not back, make the most of a not so good situation, and move on. I now walk like most on here with walking aides, have depressive moods, forget stuff, but I have now had my tricycle 2 years and it helps me get out and about, with my little dog running beside me, and when he is tired, he sits in the basket. I have taken up latch hooking, as I can hold the hook, and I do portraits of people's pets on cushions, which is very rewarding, to see the smiles on their faces. Anyway enough of me, you have caught me in a talkative mood. Hope you enjoy this forum as much as I do, everyone is so easy to get along with. God bless Jimeka

[Amore55 in reply to jimeka]

Hi Jimena

! I just saw your post with the pet portrait. You are so very talented! Wow, I wish I could do that. I looked into a trike. They don't cost as much as I thought, so I will get one in the spring. Hope you are feeling okay. Take care. Kelly

[Amore55 in reply to jimeka]

Sorry, my computer keeps changing your name even after I type it in right. I promise I may have ms fog but I do type it. In right! So sorry about that error on the last post. Kelly

[Royjr]

Welcome. I know you'll enjoy and find it very informative and relaxing as well as I do. I'm glad I found this room, I love it.

[erash]

Hi Amore55, welcome to this wonderful group. I'm in Fla. look forward to chatting with u 👋

[Amore55 in reply to erash]

Hi erash! I lived in Stuart, Fla for a year and fell in love with it. No snow! Now I live in Salt Lake City, cold, snow and blistering heat in summer. Maybe when my husband retires in ten years we can move to a gentler climate. I look forward to getting to know you. Kelly

[erash in reply to Amore55]

Hi Kelly, I'm not sure Fla is ideal weather for MS. I am glad, however, that I'm no longer trying to drive in snowy upstate New York. 🙃

I look forward to chatting with you too!

[Jesmcd2 CommunityAmbassador]

Hi Amore55 love the name. Welcome to this wonderful crazy chat. As you can see we talk about pretty much anything and everything here. But most of all support each other.

I was dx'ed last Mar '15 so lm still learning so much about it all. The biggest thing for me is trying to do to much, then paying the price the next day.

I'm a Nana to 2 wonderful grand babies, although they arnt babies anymore. Grandson is 7 and my grand daughter will be 7 in Dec.

Welcome again and hope to chat with you again

Jes

[AngieRowe]

Hi Kelly, I'm Angie from Arkansas.I have 2 daughters and 2 grandsons. My husband also has 1 son and 1 daughter, 3 grandsons and 1 granddaughter. I am 64 and just diagnosed March of this year, however, I have had several years just misdiagnosed. Welcome to our conversations!!!

[greaterexp]

Amore55, I'm so glad you've joined this forum, or is it a chat room? My age is showing!

I had an initial dx in Sept, but have yet to see a neurologist.

I have 6 kids and several grandkids, but I live in the NW, and nearly all of them are back in the Midwest😩

This site has been such an amazing blessing of information and support. I hope you find it to be so, too.

Erin

[Amore55 in reply to greaterexp]

Hi Erin! It was so nice to hear from you! You have a lot of kids like me. I have 8 kids , 3 stepchildren and 14 grandchildren so far. We expect many more will be coming. I am sorry your grandkiddies are far away, that is so hard isn't it? How are your symptoms? Are they pretty easy to manage? I sure hope so. I live in Salt Lake City. You said you live in the NW, one of my daughters and family is moving to Bellingham, WA in a couple weeks. So I will get to see some of the NW when I go visit her. Let's stay in touch. Kelly

[StacyHayward]

I'm not far away in Spanish Fork, Utah! Wonder if you ever go to MS functions and we've met!

[jackiesj]

Howdy do! Have a snap happy day....!

[jackiesj]

Amore, how are you doing now?Did you get to see the lights on Temple Square?

[Amore55]

Yes, I did get to before I left Salt Lake. They are so pretty. Love, Kelly

[nikx]

hey there, I`m an student who is currently working on a project aimed at improving modular furniture to better meet the needs of people living with MS. it would be so helpful if you can complete my questionnaire. Thank you so much!! forms.gle/Kvexw42iF1xugiza9