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MS affects work
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Tae12 posted:
I am 39, very recently diagnosed with MS. Work full time, 3 kids, married. Not really sure how MS will affect my job. not too many symptoms. EXHAUSTED, had optical neuritis as a 39th Birthday present. a little numbness, but not bad. Started on Copaxone. Any work tips or anytyhing that helps with exhaustion???
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hackwriter responded:
Dear Tae,

Fatigue is very hard to treat. There are medications such as Provigil, Nuvigil, some antidepressants, and some other medications that might help with that, ask your doctor for advice about those.

Most of us have to rest quite a bit to save our energy for the important activities each day. When I was still working, I had to go to bed after work and stay in bed during weekends to get through a 40-hour work week.

You'll need the support of your spouse and kids now, have a talk with them about helping mom by doing more of the chores and letting her rest. The fatigue isn't going away and it's only going to get worse over time, so these changes are really necessary.

Hope this helps.

Kim
 
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Tae12 replied to hackwriter's response:
Hi-

Thanks for the insight. A bit overwhelmed right now and depressed that there seems to be no light at the end of the tunnel. I can't say "I'll go to bed early and then I'll feel better", cause unfortunately that is not the case.

How long were you able to work? It worries me that I will not be able to work and contribute financially much longer.

Thanks,
Tara
 
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hackwriter replied to Tae12's response:
Dear Tara,

I worked for nine more years after my first attack. I struggled to keep up, the mental exhaustion made me have to attend a training session twice to get the new info in my head. One stressful part of working was having to hide my condition. I didn't dare tell management about it, there would have been consequences.

I was laid off in early 2008 and could not find even a one-day temp job that year, I had to rely on the generosity of family and boyfriend. In early 2009, I filed for SSDI and got it approved quickly, in only five months. I'd had 18 months of financial hardship and no insurance, but I found charity care and used it pretty successfully, all my care was free. The disability income was a relief. Medicare coverage kicked in two years later.

We are all different when it comes to the ability to work, a lot of people can continue working for many years. I won't pretend that making the transition from FT work to retirement and a reduced income is easy, it comes with a crisis of personal worth when we feel we are no longer contributing to the household and to society. But it does get easier emotionally. Financially--well, that's a whole other problem lol.

You'll go through so many changes throughout the years, but you'll make out all right, I promise.

Kim
 
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Tae12 replied to hackwriter's response:
Hi Kim-

Thanks Kim. I appreciate you sharing your experience. I have spoken to others and have heard nightmare stories when they applied for SSDI. I suppose I will cross that bridge when I reach it.

I informed my work and they seem alright with everything - needing time off for appt.s and such. Filled out all the FMLA paperwork. All approved. We'll see how it goes, though.

Do you find anything helps with the memory and fatigue?

Thanks,
Tara
 
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An_250178 responded:
I am in much the same boat as you..Work full time.long commute..2 small children at home...and frequent devastating bouts of fatigue.

Remember that you are protected by the Americans with Disabilities Act which enables you to request reasonable accommodations at work..these accommodations can take MANY forms but for me I was (finally) able to get my employer to put a couch in a small room where I can go to rest/sleep during the day. A small power nap at lunchtime..or even during my scheduled breaks has been a life saver...that and either 40 mg of Ritalin or 400mg of Provigil. I couldnt function without these.
 
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An_250178 replied to Tae12's response:
have been doing this for 9 years...I still work full time and help take care of my kids etc. Some days it feels overwhelming...get on some medication for your fatigue...trial and error...find out what you think works best for you...and if possible see if you can secure a place to go and rest during the day! Its so important...without that I would be wrecked.
 
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bclanter replied to An_250178's response:
I struggled at work for probably 6 months - tiredness, concentration, memory. Mostly without really noticing what was going on. It was not until my employeer noticed my deterioration that I figured it out.

I wish I had the opportunity for naps. For me, it is the Provigil (modafinil) that has really turned things around. I am only on 200mg a day and if it is shaping up to be a bad day it is up to 300mg.

I agree, I would be a mess again without it.
 
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bigboysmom replied to An_250178's response:
A reminder the ADA and other legal protections are only avaiable it your company is large enought. I sadly work for a very very small company they have been very good to during this last horriable year that I have but the are not legally required.
 
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bigboysmom responded:
I am thirty years old I have most likely have had MS since I have been about 18. Just dx with in the last year

I've had serveral really bad attacks this last year.

My advice is do what you can don't over it that means if you get the laundry upstairs and thats it thats fine. Figure out what your priorities are.

Keep the communication going with your support team so they know how you are feeling and what they can do for you.

I am beyond exhaustion so pacing myself sitting down and figure out what is important for the week and than for the day. Than plan everything out as detialed as possible.

I also most if not all of my shopping on line.

It is ever changing and you have to go along with it
 
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An_251421 responded:
I had Optic neuritis (blind in one eye 20/400 vision) in 1989 but got the vision back 7 months later. I was not diagnosed until 1993 when my entire right side went numb and I had to walk with a brace on my leg. In 1998 I was in a wheelchair for 6 months. I am also on daily injections of Copaxone as well.
I have found a fantastic product that helps me with fatigue.
I can send you free samples if you want. Check out my website for more info. www.askwhyvi.com
feel free to call me at 319-377-4085

I am in Iowa and am looking to find at least one person from every state that I can make a new friend and share this wonderful product.

I look forward to talking with you more.
Blessings, Jeri
 
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jennyb4 replied to Tae12's response:
I also informed my work and they have been great!!! I work 4 10 hr days and it can be tough!

I also have heard a lot of negative things about disiabilty? have one 17 yr old and he helps some. started going to MS events to get better informed and meet people with the same issues as me.

started taking copaxen 3 months ago and was on rebif for 2 years before that. have heard that ADD meds help with the fatigue. as far as memory have no clue but to just work it and use it.

jen


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