Newly diagnosed R&R

[suzy20]

Hi, I am 51 and was diagnosed in March. I'm on copaxone. Feeling pretty overwhelmed. I have horrible balance issues and pain in my right foot and right shoulder blade. Scared of what's to come for myself, husband and our teenager.

[jimeka]

suzy20 hi and sorry to meet under such circumstances. We have all been where you are now, it's not a good place to be, in the beginning. If you can, face it head on. You are right, it is scary, ms is so unpredictable, it robs you of so many things. I have found this forum to be a God send. However I am feeling, there is always someone who can relate to what you are going through. We all have similar symptoms but no two people are alike, that's how complex ms is. On here you have found a safe place to come, laugh, cry, scream etc. Everyday find something to smile about, or do something that warms your heart. It does get easier, in time, blessings Jimeka 🦋 🌈

[suzy20 in reply to jimeka]

Thank you so much

[erash]

suzy20

Hi! MS is like a roller coaster ride. And undoubtedly the period after first diagnosis can be pretty scary. Less scary when you know where the bumps and turns will be along the ride or at least how to face them when they arrive. So ask questions, arm yourself with a good health care team, and come here to feel less alone 💕

[suzy20 in reply to erash]

thank you!

[Iona60]

suzy20 Welcome to our little community. You may start to feel better after your system settles down and you and your neuro find a good combination of MS meds and symptom management meds.

[Juleigh21 in reply to Iona60]

I absolutely agree with Iona60 . My first 18 months after diagnosis was extremely difficult and unpredictable. The third DMT has currently stabilized my MS. Keep a good and open relationship/communication with your neurologist. If it isn't working with your current neurologist, ask others with MS in your community who they see. Good luck and hang in there!

[suzy20 in reply to Juleigh21]

Thank you! I do have a wonderful neuroimmunologist, so I am grateful for that.

[suzy20 in reply to Iona60]

thank you!

[Doubled51]

Hi suzy20. I was diagnosed with rms In April. Welcome to the best site anywhere. Sounds like our symptoms are a lot alike. I'm in physical therapy now for my balance. I'm under strict orders not to walk with out a cane due to falls. Be very careful walking. I have very bad pain in my left shoulder blade. It is agonizing at times. Neurologist gave me gabapentin which worked great for awhile but the pain is back again. He will have to increase doseage or try something different because it's driving me crazy. Also fatigue is a terrible symptom. On amantadine and modafinil which help a lot. On my 3 month of plegridy. You came to the right place. Many knowledgeable kind compassionate people who make you feel right at home. Sorry for the reason you're here but that part we can't change but since you are welcome to our world. We are here if you need us for anything. God bless..

Donnie

[suzy20 in reply to Doubled51]

Interesting how our symptons are similiar.... Gapentin gamve me terrible stomach issues. However, I have seen a pain dr. twice for the shoulder pain. I had my husband mark several places with a marker, and the doctor gave me lidocaine injections -- I felt relief by the time I got to the parking lot. It lasted 6 weeks and I went back and he gave me some more "tirgger injections."

[Doubled51 in reply to suzy20]

The gabapentin did great for a couple of months also helped with numbness and tingling in my legs and feet. But both are back for the last month. An MRI of neck and shoulder in Jan showed arthritis. Had a I think was a Facet injection in Feb which did nothing. That was by my pain management Dr. Before I saw them again I had my initial ms attack and was diagnosed with rms. But now I've moved so I have to start new with a new pain Dr. But I'm having another c spine MRI day so will see if anything shows up.

[Doubled51 in reply to Doubled51]

MRI Sat is supposed to say. Lol.

[suzy20 in reply to Doubled51]

I hope you can find another pain specialist where you are. I was referred to mine by my primary care physician, he works in the "Physical Medicine" group, which is where the pain injection Dr.'s apparently are located. I have also tried a cannibis CBD (medicinal only) cream and it seems to help.

[Doubled51 in reply to suzy20]

I got a referral when I saw my pain Dr last week. Now I've just got to find a new one taking patients. I've got to find a new primary physician to. Seems like Drs are all I do anymore. I'm game for anything to help these shoulders.

[WAshingtongirl]

suzy20 , I can't add much to what others have already said. But we're sorry you have MS, and happy you found us. We look forward to getting to know you better. Welcome! 💕

[suzy20 in reply to WAshingtongirl]

Thank you

[greaterexp]

suzy20 , it's a less than perfect reason to join with a group of people, but the people here have helped me immensely during this first year after diagnosis.

Everyone's experiences are different, but you'll always find someone here with whom to relate. We all care and understand. I am happy to report that although I'm still on the roller coaster a bit, I can laugh a lot more. My faith keeps me steadier along the way.

I hope you have some great support. Know that you have more here.

[suzy20 in reply to greaterexp]

Thank you so much.

[suzy20]

Thank you to all for your kindness. I have tears in my eyes just reading these, feeling your support.

[rlh1974]

suzy20 Welcome aboard! I am so terribly sorry we all have to meet over this awful frealing MONSTER CALLED MS! I bet all of us in a ballroom, without MS with have one hell of a party!!!! I would hug every single one of you!!!!! You have found the correct place to be. We all have different views. Different ideas. Are in different stages of freaking MS! But one thing is sure. We all LOVE each other here. Hopefully you will find answers her, love, joy, silliness and tears. Sometimes a lot of complaining. But that is what we do. I know I love it. I know those I have gotten to know love it. Over 2000 members. I only have talked to a couple hundred. I get bored. Anyway, Feel free to put what ever it is out there. Publicly or find some you trust and OM them. We all all pray and laugh together!

Welcome aboard!

Rob

[suzy20]

Thank you

[Daring_Greatly]

suzy20 ... I am 49, diagnosed in March, also on Copaxone.

I too feel overwhelmed. I suffer from numbness, tingling, burning sensation in my hands/feet/arms & legs. But the weakness in my legs is what worries me most.

Wished things were different for us all.

Carrie

[suzy20 in reply to Daring_Greatly]

I agree completely, the legs are the scariest😁

[Joc-42]

susy20

Welcome! These people are great, and you will receive support and very good information. I take copaxone since 2009 when diagnosed @ 69.

[ssdw1958]

Hi souz20 sorry 😐 that you have MS it is overwhelming to have this disease but this is a good place to find out any information and you should talk to your dr check the MS Society you'll find information about bye for now

[suzy20]

Thank you

[Diva1976]

Welcome suzy20 you have come to a wonderful place. I was dx in October 2016. It's definitely a monster that you will get use to. It sucks we have it, but together with all of us, we will get through it!

[suzy20]

Everyone is so positive here, it's wonderful!

[Hidden]

Hi @suzy20 Glad you joined this group. They provide a great deal of support and knowledge from their own experiences. They truly understand what you're going through, and are a great group to help you through your struggles with MS. I also love their positive attitudes in spite of their MS knocking them down at times. Don't let MS take your spirit too.

Best wishes for you and your family.

Michael

[BigMar7]

Welcome Suzy20! This is a great group to be in. You will learn many things, what drugs other people are taking and how they react to it, and just to feel that you are not alone with MS. I'm happy you found us.

[suzy20]

Thanks

[CalfeeChick CommunityAmbassador]

Just wanted to say hello and you are in the right place. The others have said it all ahead of me. I'm Lynn, went numb summer of 2016. I have lesions thoracic spine. White spots in brain that doc is not ready to DX as MS. My main problem is my legs and feet. It was suggested yesterday to check into Baclofin for my legs issues. Keep coming back here. Everyone is so nice, knowledgeable and supportive!!😀❤️😀🌈

[suzy20]

Thanks so much for your message. It seems like a lot of people experience the feet and leg issues, I hope you can get a clear diagnosis of what's going on soon. Let me know if the Baclofin helps, I'm not familiar with it. xo

[mrsmike9]

My MS started out with big issues as well, but once I was on (the correct) meds it simmered down. Don't give up if the first, or even second, med doesn't work for you. I'm on #3 and it's helping more than either of the first two. Day by day, even moment to moment, is how we must continue on. You will inspire your family by pushing onward (but don't over do it!). Listen to your body. It will tell you when it's had enough.

[suzy20 in reply to mrsmike9]

Wonderful advice, much appreciated!