I was diagnosed just 6 months ago, after suffering the past 2 months with complete numbness from my abdomen down. I couldn't drive for about a month when I had numbness in both my feet and couldn't feel the pedals. I got dx, had a week of IV steroids and the numbness slowly went away. I tried to return to that job March 1 (had been on Medical Leave since February), but they wouldn't take me back since my Neuro released me with a few restrictions. I hated that job anyway, so I went back to the job I had before that, which Ioved. Before i left that job, i was working full time as a Department Manager in retail and i loved it! I only left it because it was hit by a tornado in September 2018 (while I was there), and was destroyed. It took them 6 months to rebuild, and I went back then.
My numbness went away, but left me with damage on my spine, my doc says to a large lesion, 36mm, on my spine. I have dropfoot in my right leg, so I limp, and horrible fatigue. I'm only really able to work around 4-5 hours, 6 if I push it, before my legs turn to jelly and I want to collapse.
I just think what a difference a year makes, and I become sad and frustrated. You wouldn't know it by looking at me though, I save that for my alone times, smiles on my face, always! 😊
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Shorty25
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Not being able to work at jobs we love really cuts deep. I think a big part of our identities is tied up with what we do, and it's a difficult task to disentangle all of that. So many of us can sure understand your feelings of frustration.
I am glad you are doing better than you were and that you smile, even if it's only for others for now.
The first 18 months after being diagnosed are normally the most difficult. Coming to terms with the new diagnosis and the ups and downs of relapses and trying to find the right DMT make this a volatile time. I shed tears when I said goodbye to my career as a teacher. I just didn’t have the energy or cognitive ability to continue doing that job. Since giving up working and finding better DMTs, my relapses are much more mild and infrequent. Taking care of me is now my full time job. Plus I can do for others if they need me which I couldn’t do when working. Good luck Shorty25! This is a wild time for you after diagnosis. Please take care of you!!
Good morning Shorty25! It's a new chapter in our life is how I look at it. I was a racehorse always with a goal of first place ; now I am in a beautiful pasture with green grass as far as the eye can see. I have a magnificent waterfall and now have two beautiful foals (granddaughters). Look forward, since looking at the rear view mirror does not allow you to go forward. It does get better. Welcome!! Blessings Cynthia
Thank you everyone, for your kind replies. I applied for Disability back in April since working 4 hours a day doesn't go very far. Is anyone else on disability?
yes I am on disability,I got very fortunate,I was on short term than long term disabilty through work(my work was retail manager which was also hit by a tornado while I was there)My long term told me it was ending and I had to apply for disability since I couldn't go back to work,I did and I had my 1st check within 2 weeks.It was super fast for me.good luck,ms seemed so life changing for me so quick when you truly have had it for years ,puzzling...hmm
Yes! It took about 6mos to get approved and I provided a lot of information. Luckily, I was noting everything in a journal. Amazing I had the wear with all since I was paralysed on the entire right side. I have my BlackBerry set on UK and I find very interesting on spelling, pronouncements of words and new words. Side tracking... I will be praying for your approval. By the way, I regained everything but my exceptional memory and FULL energy drive. I am disabled and no longer work. I loved my job, going to school and sports. I'm a different now, now is my new chapter. Try to relax, ,,hard I know. Relax wasn't in my life before ms. Blessings Cynthia
Thank you! Its encouraging to know you got approved so quickly! I'm sorry for your paralysis, I'm sure that was scary. I'm glad you regained almost everything back
6months is the shortest time. Went through 4 neurologists until I found Cleveland Clinic Lou Ruvo Center for Brain Health. Doctor Hua and Doctor Wint and they look at everything. I've regained all movement and now not using cane. Thanks to OT and PT. You would never know since damage is in the central nervous system (internal)
Shorty25 Being diagnosed with 'ms' is tough. I have learned to take it one day at a time, and to keep smiling! There are many in this forum who know exactly what you are going through. We are all here to help because together we are all stronger.
Welcome to this wonderful group Shorty25 I was dx with ms in 2006 and in 2008 I had to file for disability after I had a bad relapse from the flu (no doc told me I should get the flu shot with having MS). I was approved for disability on my first try, and I think like someone else said, it took about 6 months from applying online and SS people to do their thing. I had great doctors at the time which I attribute in helping to make the fast decision. Good luck to you. Keep us updated.
Hiya Shorty25 I'm so sorry that you have been diagnosed with this monster. It's scary, and can tick you off to no end! Believe me! Most of us have been there!
If you want to be angry, be angry! If you want to be sad be sad! It's ok!
Just know, that with support you will be alright! ☺️
As far as disability goes? Write everything down!!!! Drs appt. What you do what you can't do. Everything! Oh check out the mymsaa.org/msaa-community/m...
You can log your symptoms in that!!
Hang in there! And there are meds for fatigue!!! 🤗💕
Thank you! I just filled out and mailed back my work history and functional paperwork Monday. I have an attorney who has been helping me. When I filled out my paperwork I wrote them a BOOK!! Lol
Thank you so much for everyone's story. Cynthia and Shorty25, you and I mirror many of the same events. I am so grateful that we have a place to come, such as this to discuss our experiences and learn from each other. I am so grateful for everyone's stories.
I know it is so difficult and frustrating for you. Are you taking any of the MS drugs? The DMT's or Disease Modifying Therapies are available, and you can talk with your Dr. about what would be best for you. This is a crazy, sneaky disease that affects each of us differently...it will affect you differently every time it tries to sneak up on you. I was dx in 1982. Yes, you read that right. Seems like a lifetime ago. I told the team of Neurologists who had just gone over my tests, did the exams, the works of what we
had then, that I wanted honest and complete answers, and then I asked what they thought
my future looked like. One said...I think you will be bedridden within 2 years, and dead within 5 years. That was exactly what I needed to hear! I have spent the past 37 years proving that man wrong! And I did it my way! There were no MS drugs at the time, there were no MRI's...I was dx with spinal taps...they were not fun. I walked miles every week,
building up my strength and endurance. Then I started lifting weights and working out at the gym. No, I don't have big muscles, didn't then. I'm 5
feet tall and might weigh 100
pounds, but I am stubborn and determined and it has served me well. Do what feels right for you. You are strong, there will be bad days, but there will be good ones, too! I was fortunate to have good years, and after a rocky first year, I worked full time for 28 more years! Blessings to you, and may the Angels watch over you!
we have ms, people never know it and can never tell until we tell then it is hit or miss on how observant they are. If you can you may consider slowing it down a little. Give your body time to recuperate.
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Finally found a cardio exercise I can do:)
I'm new here, my question is why drug companies are able to switch patients from a drug that works only because a new generic is available?
PART 2 OF GETTING INTO AN SUV
Part 2 of 1st dose of Ocrevus
I want to help if I can
