Just Looking to Chat: Hi everyone. I am a... - My MSAA Community

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Just Looking to Chat

Karynjynel profile image
21 Replies

Hi everyone. I am a 26 yo Jamaican American female who was just recently diagnosed with MS. To be honest, it still hasn't sunk in yet. Back story: I promise to make it short.

I was diagnosed within the last 24 hours, and it just so happens to be my mothers birthday. Whom also, coincidently, passed away from complications from MS in 2015. I honestly just need someone to talk to. All replies are encouraged.

I was also diagnosed with DDD (degenerative disc disease). My neurologist told me.i might be in a wheelchair within the next 4-5 years.

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Karynjynel profile image
Karynjynel
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21 Replies
kdali profile image
kdali

Welcome! I'm am sorry for the news on her birthday, and for the loss of your mother. I find the prediction a bit curious, given that there are very effective medications available now. I would have to have a second opinion on that, perhaps with a MS Specialist.

hopeandgrace profile image
hopeandgrace

Sorry to hear about your diagnosis. I agree with the previous comment- get a second opinion. Don’t let those words have power/ hang over you! There is hope.

Continue to write posts and vent. Even if not everyone comments, we’re here and folks do read these and it’s therapeutic to get out your feelings. We all understand what it’s like to battle MS. Saying a prayer for you.

NorasMom profile image
NorasMom

My neuro told me the same thing. He was new to my care and saw me in the midst of a bad exacerbation that had gone untreated because I wasn't yet diagnosed. I'm still walking around!

I'm sorry for the loss of your mother, but welcome to the group that none of us wanted to join!

falalalala profile image
falalalala

Welcome!

I'm sorry about your mom.

🤗

carolek572 profile image
carolek572CommunityAmbassador

Welcome to the forum, Karynjynel . We are here to chat anytime because we all have our experiences with ‘ms’ that may be similar to yours. You can visit mymsaa.org for more information. All this doesn’t take the place of consulting with your doctors. I look forward to hearing more from you! :-D

AquaZumbaFan profile image
AquaZumbaFan

Welcome to the group! You can almost always find someone to chat with here. Everyone has been really nice to me… This was my first time ever having a group of people who actually understand where I’ve been and many people understand where I am right now. My mother was diagnosed in 1974 with MS.. I get how it is growing up with Mom with a disability. She made it till she was almost 87. She was in a wheelchair at the end, but it really had nothing to do with the MS. She passed away from lung cancer and had gotten really weak, ironically, my mother passed in June 2015 .I wish you nothing but good luck. I agree with the group though get a second opinion because there’s a lot of good medicine out there. Try to stay active as you can and consider exercise in the water because it can make you feel like a mermaid. 🤗

Karynjynel profile image
Karynjynel in reply to AquaZumbaFan

Thank you. Seems like we have a few things in common. Were there any hobbies or activities that you can no longer do? How much has your life changed with the medication?

AquaZumbaFan profile image
AquaZumbaFan in reply to Karynjynel

Ahhh my new friend.. we definitely have much in common and I look forward to sharing stories with you. my friends and family had a birthday celebration for my daughter and I last night and everybody is hungry so I better make some breakfast or somebody will chew my arm off… Lol. I will definitely talk to you soon though.! Reach out to me if I forget… Please don’t take it personally I do suffer with occasional lapses of memory😆

CatsandCars profile image
CatsandCars

Hi, Karynjynel. Welcome to the group. I'm so sorry you lost your mom, and have all this bad news coming your way. I hope you're aware that there are a lot more drug therapies now than in your mom's day, so hopefully your odds of delaying or avoiding disability are a lot better. Has your neurologist talked to you about a disease modifying therapy (DMT) yet?

There's a great doctor on YouTube that explains MS and it's symptoms, treatments, and all kinds of things you can do to manage your MS. I wish I had found him sooner!

m.youtube.com/watch?v=ERrcc...

I'm so glad you found us! There is a lot of collective experience and a lot of caring here. We're here for you. We hope to hear more from you so we can try to help. 🩵

Oh, and I would get a second opinion on the degenerative disk prediction. Your doctor doesn't have a crystal ball, and he/she doesn't sound all that nice to me, anyway!

Karynjynel profile image
Karynjynel in reply to CatsandCars

Thank you for this. I appreciate the reference for sure.

mathematics profile image
mathematics

Sorry to hear your bad news. I know it is difficult for you to remain positive with such a hard prognosis but if you can try. They are having breakthroughs in MS which are massive at the moment and lets hope you will be able to get on a trial. My husband was diagnosed in 2011 with relapsing remitting MS and continued to work up to about just under 3 years now. He has recently been diagnosed with spinal chord cancer and is having his operation the end of the month to remove it. My prayers are with you at the moment and I hope you will beat the prognosis.

Jer29-11 profile image
Jer29-11

Hello and welcome! You have a lot going! I’m so sorry to hear about your diagnosis and the passing of your mom. Very glad you found this community. It’s a great group ☺️

Xvettech profile image
Xvettech

hi and welcome! I’m ina wheelchair and it’s not that bad (I’m finally faster than everyone else). lol. Have fun with it - i know it sucks but laugh! I laugh at myself daily! I’m sorry about your mom. I lost mine 21 years ago - it hasn’t gotten easier! I am happy to have found this group and you will be too! I’m happy you are here!

Greentime profile image
Greentime

Welcome to this group of amazing people. Sorry you are dealing with two big issues at once!

MSFlea profile image
MSFlea

Welcome to the group, it is an awesome one! Lots of really nice and knowledgeable people! I'm rather new to MS myself, only 6 months diagnosed. My sympathies about your Mom.💔 What a difficult time to get your diagnosis. 🧡

If you need someone to talk to, feel free to DM me.

mrsmike9 profile image
mrsmike9

I'm glad you found us here. We are joined by our disease and also by our humanity. We share, laugh and cry together. We also share things that make us laugh and hobbies. Please share!

Biggums profile image
Biggums

Greetings Karynjynel. Sorry about the news but you are in the right place. The biggest challenge is to wrap your head around your condition. Sorry to hear about your mother. The plus is you're somewhat familiar with MS. Take one day at a time. Find a Therapy you can manage. You're going to go through the 5 stages of grief. Everyday is a good day. It starts with the blessing of waking up. Your attitude towards this plays a major factor. MS definitely builds character. Stay MS strong.

Mollyabigail profile image
Mollyabigail

Welcome,, Karynjynel! What a shock for you. I am truly sorry. Give yourself time to grieve. This life changing. As young as you are, your progression should be slow. Check Dr. Aaron Boster's videos on YouTube. Follow his 5 for 5 pointers for living with M. S. I love him. Wish I was closer to Ohio. Odd that your neuro said that. With DMT's available now, a lot of us are still walking. Even the old ones like me.

Be kind to yourself, & let us know how you are doing. This forum is the best! Prayers for you being lifted!

Brindisi1 profile image
Brindisi1

Keep the faith, be strong and know that your Mom is praying for you. THE MS specialist is different from the spine issue. Get some good recommendations to see a spinal orthopedist. Physical therapy and exercise can probably address your issue, You just need a verifiable diagnosis .My best for your journey

AriSmyelin profile image
AriSmyelin

Baby girl, (sorry I called you that I hope I didn't offend), I am so happy to chat with you. I am border lined between RRMS and Secondary because my symptoms are just to darn weird. I also have DDD. I am covered in lesions. I have had MS for 13 years and was diagnosed when my first born was 5 months old. WE are all here for you. I am more than happy to chat and talk with you!!! Talk me up, I am listening (well, reading)🥰

jackiesj profile image
jackiesj

So thankful to be a part of the journey with great people.

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