Work

[Jenn]

How many have gone back to work in their original job full time?  How long did it take?

[Bill Crum]

Hi Jenn,

I went back to work full-time. After getting out of hospital it took me about another 3 weeks before I could think about going in again, especially as I commute over an hour each way and had residual vision and balance problems.

I went in part-time and gradually increased my hours as my symptoms improved. I have an office-based job and can do remote working at home which made things easier, along with a very understanding employer. I think it was about 3 months in all until I was up to speed. Two problems along the way were simply recovering from being in hospital for a month (and not taking any exercise in that time), and then having sleep problems while on steroids.

The two biggest factors are how demanding your job is in terms of travel or physical/mental effort, coupled with how well you respond to the treatment.

-Bill

[Will]

Hi Jenn. My work trajectory is different then Bill's. I took sick time off of work for a couple of weeks when I had my brain biopsy but other than that I kept working full time and was even promoted to department director during the initial 2 years of my diagnosis. Then in 2013 my symptoms worsened and started having more (dysarthria) speech disturbance and (limb ataxia) problems with muscle control of limbs and (diplopia) double vision. Now new lesions in the pons. The speech disturbance was the worst and caused my performance to suffer and had to stop working. My work place was completely supportive but the hour commute became a problem as my vision got wonkier.

I agree with Bill that a lot depends on the type work you do and in what environment. Also a lot may depend on how well you are physically tolerating the treatment. I've been in prednisone for 4 years and currently at 14mg per day and there have been times when I've been completely wiped out. It is a mixed bag, working or not. Best of luck

Will

[Jenn]

Thanks for the replys.   I'm nearing my one year anniversary (March 2016) and have started back to work PT in October.  At first I was doing great at 10-15 hours per week but have had to lower it to only 6-10 hours per week.  

My commute is also 45 minutes to 90 minutes each way.

I've had two IV treatments of 1,000 mg x 5 days (April and June) and have been on 50mg of Prednisone every other day for over 6 months along with 15 mg weekly of methotrexate.   As of my last MRI in December at the Mayo Clinic I am lesion free and will start tapering the Prednisone down starting next week (5 mg every two weeks).

They now tell me I have CLIPPERS and FIBRO.  I either need to take a nap on my way to work or on my way home.  If I put out more than 5 hours of activity in a day I end up spending the next day in bed.  Daily headaches, neck, back, ankle, etc go out on whim.  I was in a walking boot for 6 weeks after the doctors told me to "get in shape" and two days at the gym wrecked me.  Foot doctor told me that the amounts of Prednisone had weakened my ligaments and to be careful not to overstretch and rupture anything.

Part of me feels I need to suck it up and get back to work but the other part tells me I went back to soon and I'm in a vicious circle.

Still as lost and confused as when this journey started.

P.S. My doctor at the Mayo Clinic told me they are having little success with the 1 week IV of 1,000 mg x 5 followed by a 2 week taper down (60 mg to 0)