Not a good day 😫: Freshly diagnosed here... - My MSAA Community

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Not a good day 😫

Lyssi458
Lyssi458

Freshly diagnosed here, kinda don’t know what to expect. I’m suppose to start transfusions soon but no medication since being diagnosed. Symptoms seem to be getting worse, left side of my face goes tingly like icy hot is on my face and I get double vision while I’m feeling the icy feeling. Starting to happen more frequently while driving and honestly I’m just scared. I’m scared of the unknown, I think that’s the scariest part about ms. Just like seeing I’m not alone sometimes

6 Replies
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Hi and welcome. You are definitely not alone. There’s nearly 4000 of us on here . Not one of us is the same, but we all understand what you are going through. Someone will be able to relate to your symptoms. Have you told your doctor and do you have a neurologist that specialises in ms? Come here anytime and vent, been dx with ms takes a lot of getting used to because every day is different. Hang in there and we are here 24/7, Blessings Jimeka 🦋

Jesmcd2
Jesmcd2CommunityAmbassador

Hi Lyssi458 your not alone! There are a lot of us out here that know how frightened you are.🤗

Are you going to have solumedrol?

Do you have a MS Neuro?

Hang in there! We all are here for you!🤗💕

J🌠

I have a neurologist not sure if he specializes in ms but he seems knowledgeable.

Ocrevus is the medication I’m waiting for an approval from insurance I guess 🤷🏻‍♀️ I’m just not liking all these new feelings that seem to happen over night after being diagnosed. Idk if the first noticeable relapse of me losing my vision was just really bad or it’s all in my head... not literally

Welcome to the group. Sorry you had to join. I've attempted to render my resignation from MS a few times but MS has always denied it. Oh well I'll try again next year. Oh wait that's tomorrow. 🤔😊

Don't let the fear of the unknown overwhelm you. I know easier said than done. You're not alone though. No 2 people with MS will have exactly the same symptoms of MS or will progress the same way. But someone will know exactly what you're talking about with something you're experiencing.

This is a very safe place to share, rant, and ask questions. Just remember that no one here is a doctor and can't diagnose you. We can only tell you what our experiences have been.

Look your doctor up he/she should have something listing what he/she specializes in and for how long. I'm on my 4th neurologist now. I was stationed in Italy when I was initially diagnosed with probable MS by an Italian MS neurologist but that has to be certified by an American licensed physician because I work for the American government. So I had to see the neurologist up at Landstuhl in Germany he specialized in head traumas not MS. He returned to the US a month later. His replacement also specialized in head traumas and knew very little about MS. I give her credit though. She got smart on MS very quickly so that she could better help me and several military dependents as well. I'm now in the Charleston South Carolina area and have a neurologist who specializes in MS. He's great. It makes a huge difference having a medical staff that specializes in MS. The good ones will answer all of your questions and concerns. If they try to dismiss your concerns find a new doctor.

The best advice I have for the fear is to try to poke fun at it. It's hard at first, but it gets easier. Sometimes it's just down right frustrating but we're here for you. There's always someone here. We have people in the group from all over planet earth.

greaterexp
greaterexpCommunityAmbassador

I’m sorry about the diagnosis, but glad you found us.

It’s great that you are starting a DMT (disease modifying treatment) soon. That can help reduce relapses and improve your prognosis.

We are here for you.

I know it's scary. But after you get on ocrevus, and any meds for symptom control, things may start to settle down. You may even feel better than you have felt in a long time. Wishing you hope and peace for the new year.

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