Newly Diagnosed: After a year of testing... - My MSAA Community

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Newly Diagnosed

melack01 profile image
17 Replies

After a year of testing, I have been diagnosed with MS. Not a shock since for the last six months of that I was pretty sure I had it. The more I read, the more I realize my symptoms go back about 6 years. I was called Monday, received my medication today (tecfidera), and will start taking it tomorrow. Though my diagnosis is recent, I find a lot in common with the other posts I've read.

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melack01 profile image
melack01
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17 Replies
WAshingtongirl profile image
WAshingtongirl

melack01 , I think a number of us here weren't blind-sighted when we got our MS diagnosis. We expected it, but still, It hit hard. I'm happy you've received your medication, and I pray it all goes well tomorrow.

We're happy to meet you, just sorry it's because of MS. 💕

ssdw1958 profile image
ssdw1958 in reply to WAshingtongirl

Sorry to hear your part of the group it's one group you don't want to be in but if you're going to be in a group it's a good one we talked a lot about what's going on with our MS lives. My name is Sandra I also take Tecfidera. I do have to say one thing just make sure you're on time when you take it. I've been on it for about 6years. When you call to reorder you can talk to a pharmacist if you have any questions and they're pretty good they will answer any questions you might have. Just remember any question is not a stupid. Good luck to you and stay positive. One other thing you might want to limited who you tell that you have MS I am mainly saying your job. I wish I had.

greaterexp profile image
greaterexp

melack01 , I'm sure sorry you've gotten this news, but I am so glad you have a diagnosis and a plan for treatment. You'll find this site to be filled with really helpful and kind folks who share ideas and offer support and encouragement.

Let us know how you are doing with your treatment.

erash profile image
erash

melack01 sorry of course you've been diagnosed with MS but so glad you've joined us here. Looking forward to chatting with you 😊

Morllyn profile image
Morllyn

melack01 As the others said, happy to meet you but sorry it is due to MS. Hope you find our group a place where you feel safe enough to share, learn, laugh and vent.

melack01 profile image
melack01

My husband, who has been wonderful through all this, will be glad I've found a place to vent. So far, he has been almost the sole recipient of this.

Iona60 profile image
Iona60

melack01 Many of us felt so alone with MS before finding this group, especially those of us who have continued to work and/or have kept our diagnosis secret. So glad you have joined our group.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi melack01 What can l say that they haven't? But hey! How are you holding up? I don't care what anyone says, until you hear those final words, your going to have that glimmer of hope.😊 I know l did. It's alot to take in.😊

The one thing you will find here are real people, who understand😉 And venting is always allowed 😁

Jump in at anytime!

Jes 🌠

~Helpful Hint~ If you put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

melack01 profile image
melack01

Jesmcd2 I'm doing ok right now, thanks for asking. Took my first pill today, luckily so far the only side effect I have is flushing. Hope it stays that way.

SueAB profile image
SueAB

melack01 , Welcome! There is no reason for you to reinvent the wheel! Any thoughts or questions can be posted here and I'm sure you'll receive a multitude of responses. Don't be shy! Remember DEGU - Don't Ever Give Up!

melack01 profile image
melack01 in reply to SueAB

I've been reading different posts and have a few things to mention to my neurologist when I see him in August. Can only read so much at a time. Used to be a voracious reader but haven't read a book in about 2 years. When I post I have to write it out first to stay on track.

Eleyne92 profile image
Eleyne92

Hi, melack01 and welcome.

I wasn't surprised about my diagnosis either. I'd experienced several exacerbation over the years ... MS hug, numbness in my extremities and face ... and then there was the heat exhaustion. What blew my mind was the cost of the meds, even with insurance. 😨😲

melack01 profile image
melack01 in reply to Eleyne92

I think I had the MS hug back in 2012 but wasn't even thinking of MS then. Got a nitro patch, did the treadmill, some nuclear imaging and nothing found come back if you need to. Luckily I don't pay much for my meds since I get them through the VA.

Doubled51 profile image
Doubled51

Must admit ms was a total surprise. Losing most of the use of my left arm and dizziness and weakness I automatically thought a stroke. But after 4 Mris and a spinal tap and God knows how much blood work I was diagnosed with ms. I was devestated but that God Not yet debilitated which is a blessing. I've learned to keep my trust and hope in Jesus Christ and love every day like it's the last. Good luck and God bless.

melack01 profile image
melack01 in reply to Doubled51

it would have been a surprise for me too if they had diagnosed me 5 years ago. A neurologist wanted to check me for it because of double vision but because of family history checked me for aneurysms. The hospital diagnosed me with Bell's Palsy even though that doesn't present with double vision.

Fancy1959 profile image
Fancy1959

Melack01, it's Fancy1959. First of all I would like to welcome you to this wonderful chat room. You have found a safe place to come to voice concerns, ask questions, and simply speak to others who understand Lee exactly what you're going through. This chat room is full of some of the kindest most caring and compassionate people I have ever met. Although I never wish MS on anyone I did want to welcome you to this awesome chat room. Because MS has so many forms and treat everyone differently it is often very hard to diagnose. It is always hard to see if you have MS but then you finally realize and have a name put on what has attacked you and the Mystery of not knowing take some stress off your life. Know that we are here anytime you have questions or concerns. Someone on this site will have experienced something extremely similar to what you're going through if not many people. Just being surrounded by people fighting the same monster sometimes is reassuring and helpful. Take care of yourself and please keep in touch. We can't be there for you and fill in gap if we don't hear from you. We're here for your use anytime you need us. Until we speak again please remember that together we are stronger. Welcome aboard and we're glad you're part of our extended family.

melack01 profile image
melack01

Thank you Fancy1959 .

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