No support system

[LovetoSalsa]

Hi, I’m new to this site. I live in CT and unfortunately there are no ms support groups in my area and I don’t have close knit family who cares or understands my illness so I feel alone and lonely living with ms. Sadly.

[carolek572 CommunityAmbassador]

Welcome to this forum,  LovetoSalsa ! You can certainly count on us as your support group. You can visit mymsaa.org for more information. I look forward to hearing more from you. 🤗

[lbenmaor]

Welcome to our group LovetoSalsa!😀Leslie

[falalalala]

Welcome!

[kycmary in reply to falalalala]

Hi LovetoSalsa WELCOME! We are your family now. You have lots of new sisters & brothers.

Now as for the other part of your family & friends they just don't understand & they can't because they don't see it. MS is the most invisible disease to someone who doesn't experience it. That is why they don't understand & they are scared of it. Be patient & pray for them.

How are you doing? We are hear to listen, comfort, cry with you & you can rant when the need appears. Oh yeah we also help celebrate the good things. You are now being prayed for by me & others.

[LovetoSalsa in reply to kycmary]

Thank you for your prayers. When I was dx in 2008 I didn’t disclose to many but when I told my cousin an RN whom I I grew up with and asked her not to tell anyone… she said “if you do, you’ll get more help and support”. Well, I never did not even from her, til this day.

[Raingrrl]

Welcome! I live in WY: the least populated state. No MS support here either.

[AquaZumbaFan]

It feels very lonely to be misunderstood or under supported by friends and family.. welcome LovetoSalsa! You have found a lovely group of people who have a wealth of knowledge that they don't mind sharing. I have gotten lots of laughs with some of the folks that are super funny. I love to Salsa as well.. I can still do some of my dance 💃 moves but now safely in the pool.. look forward to chatting with you soon!

[LovetoSalsa in reply to AquaZumbaFan]

Me too!

[NorasMom]

This is a great group of people, and we're always glad to meet new members of the club none of us wanted to join! You can write about your hobbies, rant about the jerks in your life, or ask troubling questions, because chances are good someone among us has dealt with the same things. Just don't ask me to dance. 😬

[Greentime in reply to NorasMom]

😂

[LovetoSalsa in reply to NorasMom]

lol! I’ll keep that in mind.

[Kitsey]

Hi LovetoSalsa. I too live in CT. I’m in Stamford and there’s an MS support group here. It’s on zoom so I don’t if that’s of interest to you. Have you contacted MSAA? They might be a good resource.

This forum is a wonderful and safe place to ask questions and just vent when needed. As I’m sure others have said, MS can be different for each person although there are constants and one is that nobody can truly understand what this disease is like unless you’re experiencing it yourself.

Please let us know how you’re doing and let me know if you’re living near me in CT 😊

[LovetoSalsa in reply to Kitsey]

Yes, I have contacted them and no they weren’t able to give me any nearby groups. I live in South Windsor.

[Xvettech]

Hello and welcome! Like everyone has said: you now have friends and family in us! And we truly understand! We are here for you!

[cindyrn68]

Welcome! This a wonderful group of people from all walks of life and all manner of interesting locations. I have learned so much here!

[Misty2024]

Get on this site daily and you will make new friends. I used to live in CT years ago. Watertown, to be exact. I now live in FL and sure glad I do. It’s just too cold up there!

[LovetoSalsa in reply to Misty2024]

I was going to go visit a friend in Florida for a week but I looked at the weather and decided against it. I’ll wait until we can hang out at the beach. Stay warm.

[ms23 in reply to LovetoSalsa]

Yes, we are having a cold spell here in Florida, but it will be back in the 70s next week! I see you love to salsa and hope you are able to continue dancing! My daughter was diagnosed with MS right out of college and last year she tried a Zumba class and absolutely loves it! She still gets PT and that has enabled her to add Zumba, which is much more fun than PT and a very friendly group, all ages. I hope you can find something you enjoy as much, whether it is a support group, social group, or exercise class. And of course this group is very welcoming and knowledgeable. Wishing you the best!

[Sweetheartonvdayl]

Welcome, Lovetosalsa 🙂, to your place to vent/celebrate with us. You can feel accepted here. Hope to hear more from you.❤️Lisa 💕

[LovetoSalsa in reply to Sweetheartonvdayl]

Hey Lisa. Oh, I’m sure I’ll be venting at some point.

[Sweetheartonvdayl in reply to LovetoSalsa]

We All Do!!!

[bxrmom]

Welcome to the group LovetoSalsa . This is a great group of understanding people that you can vent and celebrate with. Look forward to getting to know you better.

[Greentime]

I remember feeling very, very alone when I was first diagnosed many years ago. I wish it wasn't so for you. As you can see, this is a very welcoming group! I hope you will enjoy the camaraderie here, in all its forms. 🤗

[LovetoSalsa in reply to Greentime]

Thank you, I appreciate that. I was dx in 2008 and married at the time, without a partner now for 6/7 years. It’s hard to meet people and not because I’m shy…. I’m very outgoing. My daughter who’s in college lives with me but still I feel alone. I’m hoping 2025 brings positive, supportive and loving people in my life.

[JTZES]

You always have friends here. I was going through a good bout of depression and this group got me through it and then more than that. Sign up for daily notices and join in existing conversations or start your own questions and you'll always get a response.

Welcome to the group.

[LovetoSalsa in reply to JTZES]

How do I sign up for daily notices? I’m not tech savvy nor am I on social media? Thank you

[mrsmike9]

Perhaps you're not missing anything! I found a support group in my area and I found it awkward and uncomfortable. I felt like I was at an AA meeting! "Hi, I'm (name). " And everyone would go, "Hi (name!). It made me feel like I had something I had done wrong, instead of having a disease.

[Helpmeup in reply to mrsmike9]

I went through the same thing at in-person support groups. Didn't feel like a good fit for me. And to top it off, one member of the group hit on me at every meeting. E

[Sweetheartonvdayl in reply to mrsmike9]

However, alcoholism Is a Disease you can die from,but MS isn’t.

[mrsmike9 in reply to Sweetheartonvdayl]

I know of people who died from complications of MS. I think it's pretty rare.

[Sweetheartonvdayl in reply to mrsmike9]

My mother died from urosepsis ( c

[Sweetheartonvdayl in reply to Sweetheartonvdayl]

Which is an infection of the bladder, caused by a neurogenic bladder due to MS. So it does happen, but rarely.

🙏🏻❤️Lisa 💕

[Helpmeup]

Hi LovetoSalsa, and welcome! So glad you found our group! Look forward to hearing more from you. 🙂

[Scout4x4]

Try this link.

healthunlocked.com/mymsaa/p...

[Tazmanian]

Welcome to the group no one wants to belong to 😂

[Peruzzot]

Welcome to the group!

[Gstrait]

Welcome Lovetosalsa yes this is a great group of people who are funny, knowledgeable, and etc. Take Care

[CatsandCars]

I'm late to reply. But 33 responses! Looks like you aren't alone with no support anymore. Amen! 😁

[LovetoSalsa in reply to CatsandCars]

I’m hoping it stays this way or gets stronger. 🙂

[agate]

Welcome! You've already heard from people who haven't found MS support groups in their area. The in-person support groups I've tried (in 3 states by now) haven't been helpful for me or have been nonexistent. A couple of support groups sent out regular notices about their meetings and sometimes had guest speakers. But I've found online support groups far more useful.

[LovetoSalsa in reply to agate]

I haven’t found one of those yet….

[Mayzee12]

Hello Lovestosalsa and welcome!! I love this forum, you will also.

[1yoyo]

I SOOOOOOOOOO understand you!!

[Irishgirl76]

Hi friend, my name is Pat. Be patient and get ready to experience a wonderful community who have so much in common with you. There are many topics to discuss so slowly read and ask questions. MS SOCIETY has lots of resources. Check your area for specialist and jot done your symptoms. Make a checklist and there should be other groups around you. You are welcome and hope we all learn from each other.

[Writter]

since when MS? wchich tratament have you?

i haveMS since 1998, since 2005 Rebif inyectable 3 times a week until now. I was born in 1968. I would like a pill only for MS, but it is no possible now. I live in Spain and my MS begun in the south of Spain, with sun and good weather.

But it is a genetic problem that exists since I was born because of somebody of my family in my past.