Multiple Sclerosis

[kmrmom42]

After spending 25 minutes scanning through the messages to find others diagnosed with MS I decided that maybe it would be best to start a new thread specifically for those with the condition so we can find each other.

I was diagnosed with MS back in May of 1996. I was 40 years old, had three kids ages 16, 14 and 12 and had just graduated from nursing school. I took the NCLEX two weeks after being diagnosed. As I took the exam I wondered why I was bothering.....

But now I KNOW why! I went into remission where I stayed until recently. Fortunately prior to having my latest exacerbation I had completed my MSN and was employed as a Perinatal Educator. I don't have to do a lot of bedside nursing but I do spend a lot of time using the computer which can be hard due to the residual nerve damage from my latest bout of optic neuritis.

I am single now and almost 51 years old and worried about how I will manage to continue to support myself until l can retire. Who knows when that will be because, foolishly, I thought I would still be married and would be sharing the retirement burden with my husband. Sigh.

Anyway, I was just interested in talking with others with this disease, to see how you are doing and how you are managing.

Thanks for listening to anyone who had the interest to read to the end of my post!

Karen

[graciemay1]

I started working in this field in 1998, and was diagnosed with MS in 2000, divorced in 2003, I too have wondered how I will continue to support myself.. Hang in there!

[kebsa]

i live in australia and have had MS officially since 2004 and unofficially since the mid 90's- i am also wheelchair dependant having lost one leg and the remaining leg is MS affected. I have reflex sympathetic dystrophy that has been a big problem too- I have managed to work part time telephone nursing for the past 9 years and most of the time i have managed that well. LAst year was one of those horror runs in terms of my MS, i was hospitalised 22 times ranging from one week to 5 weeks, so i spent well over half the year in hospital.

here in australia we have a government disability pension system and when last year was so tough eventually i was able to apply for the pension and qualified so that at least i had some income but i was too sick for the first 3 months and had no one to do it for me so quite literally had no income for 3 months. eventually some helped me deal with paperwork and then it has been suggested that i try to keep the pension active as a saftey net. I can only manage to work 15 hours per week- the rules for the pension state that your income must be under a certain limit (and that is definately not an issue as 2 days pay is not a great deal!) but the there is also a limit of 15 hours per week, so i am right on that threshold- i have had so much sickleave that i have been dropping below that so have just stayed within the rules but now i am trying to avoid more sick leave- work are beginning to lose patients and have threathened to make me casual instead of permanent part time- i can't pick up shifts at short notice as i need to fit around carers so casual work is not really an option- my supervisor suggested i apply to drop one hour so that i fit the rules for income saftey net so that when i am well i get no pension but when ill the pension kicks in again but i work for a state government agency and they have replied that 15 hours is the minimum for part time work, the pension is federal government and their rules are clear that i have to stay under the 15 hours even if it is only by 10 minutes. my choice seems to be drop down to casual but risk being unemployable because my health does not allow me to respond as a casual employee but i would have the pension ($560 per fortnight) or carry on working 15 hours so the pension stops and if i have another relapse i have to re apply for the pension when i am well enough to get to the department (so it could be several weeks with no income again) i also face the risk of the pension rules changing and such changes only apply to new applications- a few years back the cut off was 20 hours but they have cut it back and made it tougher now

i want to work and intend to for as long as i can, but i have to face the fact that my MS has reached the point where that is gettin really tough- i am worried that i am reaching the stage where i am becoming secondary progressive rather than RRMS - at the very least it is picking up in severity- by the end of a shift my vision is getting ropey to say the least and i am so exhausted by by second shifts end that i sleep nearly all day the next day.

i live alone with no family support, i feel so alone with all this stuff, work has been supportive until now but i seem to be in a strange sort of no mans land between being reliable enough to be employable or having to stop work. Its crazy when one government departments rule means you breach the others rule but if you comply with the second you breach the first ones rule!

does anyone else find themselves in that strange no mans land between being disabled to the point of not being able to work and yet working just enough that as long as you don't have a relapse things are OK- i wish i could feel safe that i will have a few good months at least now before having another relapse but this thing does not work that way- i know that old saying that the only certainties in life are death and taxes, that life is always unpredicatble but i just know the person who came up with that little gem did not have to deal with the added uncertainty of auto immune disease!

how do you guys deal with this kind of tight rope!

[keithjones]

Please excuse me for being very ignorant on the subject but I noticed quite a few new nurses being diagnosed with MS. Is there any truth to the rumors about Hep B vaccine being linked to MS? It would make since that nurses required to get hep B vaccine before entering NS would have a higher incidence than the general population if there is any link. I'm pre-nursing and need to start my hep-B vaccinations soon (though I believe the school allows students to sign a waiver and skip it). Thanks for any info on the subject.

[kmrmom42]

Check out this article on WebMD:

http://www.webmd.com/multiple-sclerosis/news/20040913/hepatitis-b-vaccine-may-be-linked-to-ms

After reading the whole article it seems that the last sentence says it all-

"This has certainly been on our radar screen, and we need to continue to look at it," he says. "But the preponderance of evidence suggests no association."

In my personal opinion, statistically I would be more afraid of contracting hepatitis B than developing MS. (And I have MS)

Good luck with your decision.

[Jules A, MSN]

I think the reason we hear of so many nurses with MS is because it affects woman more often than men and nursing is still largely dominated by women. We are also really in tune with medical issues and could possibly have an easier time getting a diagnosis than the average person without inside contacts. ?

[clmrnc]

same as you..51 and just diagnosed...lot to process.fortuneatly work as case manager (telephonic) but not sure if i can keep up with the pace due to fatigue

[sherriuhles]

I am new to allnurses. I was diagnosed with Transverse Myelitis in May 2008. I am still significantly disabled. All my kids will be in college next year and I need and want to go back to work. I am taking the first step by taking a nurse refresher course, but I am really at a loss as to what I can do. I would really like to get out of the house.