Living with MS: I was diagnosis with Ms... - My MSAA Community

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Living with MS

Mdixon profile image
33 Replies

I was diagnosis with Ms, Sept 2016. I very depressed about this. I have so much pain in my legs and arms. I also deals with headaches. Really need to learn more about MS because I feel lost

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Mdixon profile image
Mdixon
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33 Replies
Royjr profile image
Royjr

This is a great place to learn about MS, but you should also contact the MSAA Society in your area and ask any questions that you have. MS effects us all different and we can only tell you what we're going through or experiencing. Good luck to you and look forward to hearing from you soon.

Jbahnan profile image
Jbahnan in reply to Royjr

GREAT ANSWER!!

jimeka profile image
jimeka

Hi sorry about your recent diagnosis. What type of ms have they told you you have? If you read through some of the old posts you will notice that we are all different, but we all have ms. Guaranteed someone on here will have a similar symptom so someone will be able to relate to what you are going through. MS is not very nice, it is something you have to learn to live with, but keep smiling. Don't let it rob you from who you really are. I know that it is very early days, but someone is always around to listen to what you have to say and help where they can. Blessings Jimeka

CalfeeChick profile image
CalfeeChickCommunityAmbassador

You come to the right spot. If you have specific questions go ahead and write a post asking your questions and Minnie will respond with whatever experience and knowledge we may have. I just got a tentative diagnosis in August. Everyone here is so kind and can relate because we all have MS too.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to CalfeeChick

Talk to text put Minnie in there and I meant "many!" maybe it' got some ms fatigue also!

Sukie427 profile image
Sukie427 in reply to CalfeeChick

LOL, CalfeeChick! Seems to be going around these days!

tnolan2006 profile image
tnolan2006

Sounds like you're getting hit hard. Get an effective drug treatment (find a doctor who understands treat to NEDA}. Best thing to do is to take action to stop the damage.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to tnolan2006

What is NEDA?

tnolan2006 profile image
tnolan2006 in reply to CalfeeChick

no evidence of disease activity i.e. no MRI changes, relapses, brain or spinal cord atrophy. Probably only the higher efficacy drugs allow treating to NEDA.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to tnolan2006

Thank you, I'm still learning so much..

greaterexp profile image
greaterexp

This is a wonderful place to vent and ask questions from those who can truly empathize. I'm sorry you'r pain is so severe. Have you asked your neurologist about treatment for the pain? Have you been taking any DMTs?

I was also diagnosed in September of this year, but haven't begun treatment, since my doc plans to do more testing. I do have a muscle relaxer to help with the muscle spasms. Reducing the spasms has reduced pain for me.

I hope your neurologist has some answers for you very soon.

erash profile image
erash

Welcome Mdixon

Knowledge is power. So do your research, ask your healthcare providers, and by all means ask questions and share your concerns here. We are a warm and supportive group.

Many have or are experiencing your symptoms and may be able to share helpful suggestions

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Mdixon welcome to our amazing chat. Even if it's for this monster they call MS.

I was dx'ed about 18 mos ago, as my PCP so "kindly" :/ pointed out to me the other day. Grrr. :) Like you, l was depressed. I was also scared, and so very angry. It took some AMAZING friends to help me deal with it all. Along with an awsome support group.

See if you have a local MS support group in town.

The MSAA has all kinds of materials for reading, and a leading library avaliable.

Toll-Free Helpline: (800) 532-7667 MSAA

Also you have us, we are a pretty good group of people :) We talk about pretty much anything and everything here. But most of all give each other support :) Welcome again.

Mdixon profile image
Mdixon in reply to Jesmcd2

Thanks

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Mdixon

Mdixon l sounded like a recording, yikes, lm sorry. But glad you're here

Mdixon profile image
Mdixon in reply to Jesmcd2

Thanks

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Mdixon

Mdixon how are you today?

Mdixon profile image
Mdixon in reply to Jesmcd2

I'm ok. Thanks for asking

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Mdixon

MS is alot to take in, isn't it? Are giving you anything for the pain?

Mdixon profile image
Mdixon in reply to Jesmcd2

Yes it is! Very scary but I went to MS meeting Friday with Shared Solutions and it was very helpful. I have a lot going on with me. They have me on daily medicines besides copaxtone.. My Vitamin D level was only @ 9%.. I fail Evey test that they gave me .. But yet I believe. My left leg & arms aches everyday. Headaches about to take out.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Mdixon

Mdixon lm so sorry about the migraines, arm and leg. Are they going to give you around of solumedrol maybe? IDK but sounds like a relapse? But lm new at this stuff to.

Your lucky you got to go to Shared Solutions meeting. lm on Copaxone 3x's a wk. Although lm still asking my dog to take it for me. He might say yes someday. hahaha

We have alot of ppl here on Copaxone and different hints on how to make it easier. :)

Well congrats on failing! You get an A :) jk The docs hopefully will get you on track st least. And l think almost all of us are on Vit D, l take 4000mg a day.

The one thing l do know is that MS is always changing it's a fun ride :)

Eh who am l trying to kid, it's kinda scary

Mdixon profile image
Mdixon in reply to Jesmcd2

😍😍😍

Featherhead profile image
Featherhead in reply to Mdixon

Well Mdixon you sound a bit like me. With your symptoms and since I started the copaxone and big dose of Vit D I have improved My D levels were v low too. My legs feel stronger now and seldom any pain. I do hope it will work this well for you and that you get used to taking the injections.It all takes time to get used to.

Mdixon profile image
Mdixon in reply to Featherhead

Thanks

Jbahnan profile image
Jbahnan

MDixon u came to the right place for information! GOOD LUCK in the future!

Sukie427 profile image
Sukie427

Hi, Mdixon . Welcome to this site. I agree with RoyJr--this is a great place to learn about MS and how we all deal with it in our ways, and even some symptoms we never knew existed. But everyone is also correct when they tell you to sit down with your healthcare team for as long as it takes for them to answer all your questions and make you feel more comfortable and less scared. You are in a new normal now, and you should learn as much as you can about it. MSAA is a great learning tool with their informational publications, and so is the National MS Society, which has an archived library on many MS subjects. But this is not a disease where one size fits all; everyone has a different constellation of symptoms. Don't be shy about asking your healthcare team for help--that's what they're there for! Good luck, and we are always here if you need a shoulder to lean on. Sukie427

Mdixon profile image
Mdixon in reply to Sukie427

Thanks

Mdixion, this is MSFighter welcoming you to this wonderful chat room. Oh how i wish i could reach through this electronic link and give you a big hug. I know you are scared to death right now because I was in the same boat about 4 years ago. I know you feel so lost but remember no matter how winding or bumpy or full of potholes this path MS is leading you down remember there are dozens and dozens of other people on the same path you are. If you stumble and fall one of us will stop, reach down, and grab you by your hands and get you back up on your feet. Then another one of us will come along your other side and wipe the tears from your face.

We are here for you. Remember we are only a post away. You can feel free to vent at us, cry at your failures, and laugh at your successes, and we will join you in all 3. I want you to remember that together we are stronger and together we can beat this monster that has attacked us. I'd also like to welcome you to be in our newest MS Warrior. As an MS Warrior you must understand that we never give up and we never give in we simply keep fighting. So stand up and fight with us MS Warrior. Fight on.

Mdixon profile image
Mdixon

Thank you the encouring words!

Featherhead profile image
Featherhead

Mdixon we are all here, you feel lost but you are not lost. It takes a long time to get your head around the reality.one day at a time. Everyone is so different with ms. Make sure you get an appt with a recommended neurologist or ms specialist. Good luck and keep in touch.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Mdixon So how are you doing today? Are you getting ready for the holidays yet?

Mdixon profile image
Mdixon in reply to Jesmcd2

Sorry it took so long to reply. Have not been feeling well. Getting ready for a MRI on NY spine. Been having it rough. Thanks for checking

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Mdixon

Let us know how it goes :) Hope you feel better soon.

Jes

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