MS getting worse 😢: I’ve had MS since... - My MSAA Community

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MS getting worse 😢

Tracy79 profile image
14 Replies

I’ve had MS since March 1995. Until about 5-7 years ago I’ve had few to no problems with it. I do take Avonex, antidepressants, thyroid meds, hypertension meds, baclofen, clonipin, just started a statin, and a bladder med. until November 2017 I was an elementary teacher for 20 years 🙁. I was placed on leave because I was forgetting important deadlines and data as well as falling in the classroom. I’m coming to grips with not teaching any longer.

I’m writing to those who have MS, because I walked 1-2 miles 3-5 times per week, have done yoga every morning for last 20 years. Now I am having difficulty with yoga, can no longer walk as I did. I am wondering if this has happened to any others?

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Tracy79 profile image
Tracy79
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14 Replies
Fancy1959 profile image
Fancy1959

Tracy79, it's Fancy1959. I would officially like to walk into this awesome chat room. You have found a safe place to come and ask questions, voice concerns, and simply speak to others who understand exactly what you're going through because we're there ourselves. Chat room is full of some of the most caring, compassionate, and kind people I have ever met.

As people replied to your post you will see your story is not an uncommon one. I too have been diagnosed for about 5 years but when I was diagnosed they said I'd had a mess for at least 15 years. It's just during these past 5 years that I've had major issues very much like you. I can no longer play sports, I can't run at all, even walking is a major achievement as my balance is shattered. I have taken innumerable false and I'm paying the price as I've had my right shoulder replaced recently and next I need my right knee work done from falling so awesome. What is so special about the chat room its we understand. This is a great place to come in vent, ask questions, or simply talk to someone big shoulders that you can lean on, or cry on, or scream at ever makes you feel better.

Make sure you stay on your disease modifying therapy and doing nothing will allow this disease or the monsters progress as it attacks your body on hindered. Keeping active and working on exercise and therapy is the best weapons to keep mobile. We're glad you found us. Remember we're just a post away. I know the initial stages and the stages were the our disability progresses are some of the hardest to deal with. I know because my disability has progressed as I have gone from relapsing and remitting MS to secondary progressive MS in the last 2 years or so. I wish we were closer so I could be there in person for you. I live in Central kentucky so what will have to do is I will send you a big electronic hug through this connection.

Remember to keep fighting, to keep active, and to realize that we are stronger together! We're all just a post away.

Tracy79 profile image
Tracy79 in reply to Fancy1959

Thank you Fancy1959. I appreciate the space where I am understood and supported. I will stay on my meds and continue to do as much as I can do for myself.

You take care of yourself too. 😊

jimeka profile image
jimeka

Tracy79 unfortunately yes. It happens to a lot of us. There are no set rules. I am slowly learning to appreciate what I can still do. By the way, welcome, sorry that we are meeting under such circumstances. Blessings Jimeka 🦋 🌈

Tracy79 profile image
Tracy79 in reply to jimeka

I too am slowly learning to appreciate what I can still do. Very slowly this time. As I have heard MS is a very fickle disease. I am doing a different version of yoga but I do miss walking

Minifinney profile image
Minifinney

Yes, you don’t stand alone. Avonex was my first therapy drug which I took for 11 years stopped avonex because my body was turning into ground meat from all the injections and I began to circle the drain from there.

Tracy79 profile image
Tracy79 in reply to Minifinney

I’m sorry your body wasn’t able to tolerate Avonex. I’ve taken it for 20 years with no adverse side effects. Be well 😊

Minifinney profile image
Minifinney

I was diagnosed 9/11/2001

Juleigh21 profile image
Juleigh21 in reply to Minifinney

Horrible day for everyone but a double whammy for you☹️

pihokken profile image
pihokken in reply to Minifinney

Oh wow! You will never forget that date!

ssdw1958 profile image
ssdw1958 in reply to Minifinney

You know that date I know we all will never for get but that date is when I went partially blind in my right eye and I didn’t know why until 3 years later. My husband at the time was working at Logan Airport in Boston and he knew some of the crew on the planes. Not a good date all around. I’m sorry 😐 that was the date you found out you had MS.

Iona60 profile image
Iona60

Hi! Wondering if they are considering switching you to see need DMT. I was on copaxone for 10 years when it stopped working. Had to switch and then switch again.

Tracy79 profile image
Tracy79 in reply to Iona60

My neurologist is very proactive. I’ll see him the end of February.

ssdw1958 profile image
ssdw1958

I also worked in the school system I have been retired since 2016 and am bored like you can’t believe. I was let go but with the help by a few people. Now I don’t walk well. As you can see by the time of this post I don’t have a good sleeping time. I was diagnosed in 2004. Well i should try to get some sleep.

MsGelfling profile image
MsGelfling

I felt like that on Avonex, too. I take Gilenya now. There are no side effects, less gait problems, less pain. Try it. I bet you like it, too.

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