MS Employment Stats

[Tomjadg]

At 57, I need to work about 6 more years. I also need the coverage for these drugs.

I am lucky that I have an office job, so my main concern is walking...to get in to my office, and being able to continue to drive to get there.

Walking is getting much harder. Driving is ok, I just have to be more carefull with foot movement.

What a change from one year ago

[Sir-Voor]

I’m 48, working as a CAD manager full time and was DX almost 10 years ago.

There are so many factors that affect the MS Employment Stats, it makes that 80% meaningless.

If you have a high stress physically demanding job vs a low stress office job the odds change greatly.
Plus if you live in a country where only severe MS cases get DX, the % of not working is going to be a lot higher.
Also culture stigma or lack of towards working vs not working, quality of healthcare, and pure randomness of what symptoms you get and what is needed for your job.

With my symptoms if I was a coal miner, fireman, nurse, construction worker, etc I would not be able to do my job, but luckily I’m a drafter/CAD manager.

Plus with 9.1% (That is really 25%) unemployment, the stats are going to be high to start.

[Spydre]

I've only been dx'd a cpl of years but I think I've had MS for 5-10 years. I was just denied for SSDI. They agreed I am unable to do my former job (management) due to cognitive issues but I should be able to work as unskilled labor.
Between the fatigue and degenerative disk disease I have difficulty sitting or standing for long periods. To look at me I'm fine.

Get a good attorney and appeal that right away. They said the same thing to me, too, and my attorney's office said basically they are describing a job that no longer exists in today's world. Your attorney should have you see a doctor, and SSDI should at a minimum, have you see a medical doctor and a cognitive exam. That's what they did for me, and despite it taking two years, when it went to hearing, the only purpose was for the administrative law judge to rule on the record - no questions were asked. Yeah, the attorney gets 25% of the back payment + expenses, but it was better than continually getting denial after denial.

[twisterred]

I managed to work about 10 years after my diagnosis.
My employers was really helpful and understanding, but I couldn't continue. Fatigue, cognitive trouble and pain were too much.

[Windwalker]

I worked for three years after Dx. Like many of us, I was having significant issues, which drove me to get the Dx.

The first two years after Diagnosis, I continued business as usual...getting on a plane twice a week, worked long hours and lots of stress.

The last year and couple months I worked from home. Even that became to difficult.

I do not think pushing for those last three years did me any favors. I feel it escalated the condition.

My career, which was definitely how I defined myself, seems a distant memory now. It's been just over a year since stopped working.

[nixiepixie]

I've worked retail management since 1999. Running back and forth across stores, unloading trucks, working freight, up and down ladders, and all around sweating my butt off pretty much all day. I'm on my feet pretty much 8 or 9 hours a day.

I had my first flare in 2004, brought on by the stress of my father's death. My neuro didn't want to make a diagnosis at that time, he thought it could be a one time flare. That flare was only ON and I worked through it.

My second flare was in 2008, but I was unemployed. ON again, but didn't have insurance so I didn't go to the doctor.

Had my third flare in last fall. Started Oct. 30 and lasted for at least a month. Went back to the neuro and got the concrete diagnosis and started Avonex. My entire right side of my body from my shoulder down and the bottom half of my left leg went completely numb. My hand clawed up to the point I couldn't write and had to start using my left hand for everything. My feet were so numb my neuro and one of his med students couldn't believe I was still walking... and not even walking "funny" at that (although I felt like I was walking like I had a stick up my butt).

I had IV steroids for 3 days, went to work 2 days with the IV port in my wrist. I left work early once since we were over in hours and someone had to leave anyway. If I didn't, it would have been a cashier and I would have had to spend the day being a cashier and I really didn't want to. This flare started Oct. 30 and lasted until at least the end of December. Obviously this was the worst timing possible when you work in retail. But, I got through it and it's gonna take more than a flare to force me to quit work.

Seven years later, I'm still going strong. Honestly, I think it's because I have such a physical job. I've started wearing a pedometer at work, it's rare that I don't walk 12,000 or 13,000 steps at work. One day was over 16,000. It's like built in physical therapy all day everyday.

[mjan]

I've only been dx'd a cpl of years but I think I've had MS for 5-10 years. I was just denied for SSDI. They agreed I am unable to do my former job (management) due to cognitive issues but I should be able to work as unskilled labor.
Between the fatigue and degenerative disk disease I have difficulty sitting or standing for long periods. To look at me I'm fine.

Hello my dear. I know its hard to hear you are DENIED but untill you are over 50 they deny most who apply. AND they contract with providers that will find SOMETHING to say to keep you working.

Gosh what UNSKILLED duties do they think you can do?
When I was out last year my boss said I could FILE..really? I had mostly severe cognitive problems but multiple disorders.

Anyway since MOST get denied the first time that does make you eligible to get a Disability Atty who will not get paid unless you win. I did it w/o one ans surprisely I was approved in 4 months due to Alsup that contracts with your employer. They are real go getters. BUT I think some can get approved w/o an ATTY (who gets a portion of your back award).

Good luck hon.. Trust me I know its hard to move on after being such a strong hard worker.

Warmly, Jan

[gomer]

In a way I am an odd one.......

I ended up on SSDI in the mid 80s. They thought my neuro problems msut be due to diabetes, I am diabetic. I was a regular outpatient patient at ORMC (Orlando) and was TOLD I should apply for SSDI. I did NOT want to, and resisted for a while. I went thru vocrehab and did any and every thing I could to AVOID going on disability. In the end, that worked against me, but after about 2yrs did get it and backdated to boot at Age 40 when I got my first check.

So age wise you might say I was disabled & on SSDI by age 38, typical, however I only got my FORMAL RRMS Dx a little over a year ago.

Now I am 65, never dreamed of surviving to my 40th birthday let alone to this age.

Gomer Dr. of, Been There, Done That

[Jules A]

There are so many factors that affect the MS Employment Stats, it makes that 80% meaningless.

If you have a high stress physically demanding job vs a low stress office job the odds change greatly.
Plus if you live in a country where only severe MS cases get DX, the % of not working is going to be a lot higher.

I agree there are variables that make each MS situation different but don't think this makes these figures "meaningless". I'm not sure what countries don't diagnose until someone is severe but that isn't the case here.

Like you said you are lucky to have your type of job but that doesn't mean that the coal miners, firemen, nurses, construction workers etc. don't count because their job was less MS friendly.

[chalknpens]

teachers and cog fog

I am a teacher. Soon, I will have to say was a teacher. I'm sixty-one, planned to work 'til sixty-three, but really declined this year and accepted the suggested medical leave of absence through the end of this school year and a permanent sub in my place.

Fatigue has always been major, but cog fog hit big time last year, and only worsened through the summer and fall, and by winter I was writing more daily substitute plans than teaching my own lessons. And that takes its own toll.

Yes, I feel bad. Yes, I feel like I ought to have been able to make two more years. And yes, it will cost us financially.

But I couldn't stay and do a poor job teaching at the top of the salary scale... not in good conscience. And not physically. And not emotionally.

So, to your list of physically challenging jobs, I would ask you to include cognitively challenging jobs that are lost to cog fog and depression and fatigue and loss of focus and concentration. I worked really hard to become a teacher, spent a lot of money for graduate courses for a required master's degree, and have now lost everything I'd invested, cognitively. And now I'm a statistic.

[Sir-Voor]

I agree there are variables that make each MS situation different but don't think this makes these figures "meaningless". I'm not sure what countries don't diagnose until someone is severe but that isn't the case here.

Like you said you are lucky to have your type of job but that doesn't mean that the coal miners, firemen, nurses, construction workers etc. don't count because their job was less MS friendly.

In no way did I say or imply anyone should not count.

I said WITH MY SYMPTOMS there are jobs I could not do,
and to expand on that if I had different MS symptoms I may be able to do some of those job and may not be able to do my current job.
In short it is it is what MS symptoms you get is what determines what jobs you can or can not do, and that is just random, luck, blessing, curse, life, chance or what ever you want to call it.

The countries don't diagnose until someone is severe are normally countries with government health care (not all, but the majority) that ”mistakenly” believe it a cost savings to have a none productive citizen and not be out the drug cost.
Then have a productive citizen and be out the drug cost.

That 80% is meaningless especially here in the USA, the US has the best doctors, the most MRI machines, and the best access to medical and health information. All those factures reduce that 80%, plus with drug like Ampyra that number will be being reduced even more.

[Tawanda]

All those factures reduce that 80%, plus with drug like Ampyra that number will be being reduced even more.

According to my research, [I]fatigue [I] is the number one reason PwMS site for leaving the employment force (it was for me). Unfortunately, I don't think a drug like Ampyra is going to change anything that much in terms of employability, but hope that I'm wrong...

[Sir-Voor]

According to my research, [I]fatigue [I] is the number one reason PwMS site for leaving the employment force (it was for me). Unfortunately, I don't think a drug like Ampyra is going to change anything that much in terms of employability, but hope that I'm wrong...

Officially you are correct; improvement in walking is that only improvement the makers can clam, But that is only because walking the only improvement they tested for in the trials.

As someone that has been on Ampyra for just over a year, I have to say it has done a lot more then just walking for me.
Walking, balance, speech, brain fog, fatigue, and strength, are some of the symptoms it has helped me with. (although not using a ton on energy walking, has to have helped my fatigue I think by its plugging the leaks in my myelin is the main reason I feel less fatigue.)

From what the post by users I have read, what symptoms in helps seem to be as random as what symptom MSers get.

I don’t know how much one just one drug will affect things, but luckily there is more then one new drug and more in the pipe-line.
Plus diet can help a lot, for example I have great things for some when they go gluten free.

I will say this before Ampyra I did work full time and did not much after work, now I’m more productive at work and have energy to do stuff after work.
Ampyra was my magic pill, and I hope you and everybody finds one that works for them.

[mgoerke]

we share dx date :-(

My dx came in 9/2010. My last day of work was 4/1/2011.

I think I may have had ms since 2006, but it was only in 2009 that i started having symptoms causing me to seek an answer. The 1st I heard that I might have ms was in 7/2010.

I was dx on 7/2/2010 and I have been forcing myself to continue to work despite my growing fatigue and 3 more relapses since then. My doctor has finally gotten it through my head that I need to walk away from working and make sure there is enough of me to go around for my family and myself every day.

I'm working out my finances and building a cushion and planning to take leave at the end of the summer :-(

[1523371682@facebook]

43 year old mother of 2. had to stop working 4 months prior to diagnosis. On disability.