It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Multiple Sclerosis Message Board

  • how long have you been living with MS ?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 09-04-2008, 07:10 AM   #1
    Rena87's Avatar
    Join Date: Sep 2008
    Location: Sydney
    Posts: 3
    Rena87 HB User
    how long have you been living with MS ?

    hey guyss...

    how long you been living with MS? DOES IT have a big effect on ur life ? for example working

    Sponsors Lightbulb
    Old 09-04-2008, 07:14 AM   #2
    anxiousme's Avatar
    Join Date: Jun 2003
    Location: chico, ca, usa
    Posts: 479
    anxiousme HB Useranxiousme HB Useranxiousme HB User
    Re: how long have you been living with MS ?

    I've been dx for 2 years. So far, the fatigue is the biggest problem. I work full time and have two children 7 and 3. I'm always busy. Recently, I have been through some really stressful times. I think it is affecting me, for the worse. Good Luck on your journey.

    Old 09-04-2008, 08:13 AM   #3
    Join Date: Aug 2008
    Location: North Carolina
    Posts: 79
    brclrk80 HB User
    Re: how long have you been living with MS ?

    I have diagnosed since August 6th of this year. The worst symptom I experience is the fatigue. MS fatigue, I believe referred to as lassitude, is a lot different than normal fatigue; you have to have MS to understand it.

    So far I am unable to work, not just because of the fatigue, but other things as well. I am starting Rebif next week and hoping I tolerate it well.

    I have only been diagnosed a month, but my neurologist suspects I have had it longer. I have had fatigue for years, not this bad though. I have had the paraesthesia a few times over the last five years, each time lasting about two weeks. So far, my symptoms have lasted about three months and go far beyond anything I have had before.

    Old 09-04-2008, 08:52 AM   #4
    Senior Veteran
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,811
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: how long have you been living with MS ?

    I was diagnosed October 1982. Next month will be 26 years. Hindsight shows symptoms appearing when I was 14 (making October 30 years). I enjoyed a good 20 years without problems, but have been permanently disabled since Nov. 2002. I still work, but my work is now homeschooling, gardening, and volunteer work.

    Last edited by MSJayhawk; 09-04-2008 at 08:55 AM. Reason: boo boo

    Old 09-04-2008, 11:28 AM   #5
    Senior Veteran
    Join Date: May 2007
    Location: New Brunswick, Canada
    Posts: 1,376
    Nenu HB User
    Re: how long have you been living with MS ?

    Diagnosed since March 2008. I went off work in January/February 2007, and have been off work since, pending my return based on my neurologist's ok.

    It was affecting me on the work front for sure. That's why I had to go off work and get help. Of course, I didn't suspect it could be MS at all at the time. What was really troubling me when I went off work was chronic facial pain (left side) and numbness in my pinky/ring fingers on both hands. Add to that almost daily headaches that I woke up to, that intensified over the day. No OTC drugs could help ease the pain.

    There were times I nodded off at work, even having 8 hours of sleep and drinking coffee like a mad woman. I didn't understand that. I'd never nodded off like that, even going on 3 hours of sleep during University listening to a 3 hour lecture by a professor in a monotone voice.

    Now my most troubling day to day symptom is burning mouth syndrome by far. Hard to say if MS caused this, or another factor, but my neuro's convinced it's the MS. I also still get headaches, and usually on the left side of my head, as I experienced in the past. I had a wicked headache for 2-3 weeks recently that didn't break after taking tylenol/advil, and was also causing tingling and burning pain in my head/face on that side.

    I do plan on returning to work however. My case worker for long term disability is covering all bases before she decides to send me back. She doesn't want a scenario where I return, get overwhelmed and relapse again (my last relapse was in May, and when I do relapse, all my symptoms come on full force).
    RRMS Dx 03/08

    Old 09-04-2008, 11:40 AM   #6
    DavidLeeK's Avatar
    Join Date: Jul 2008
    Location: Albuquerque, NM
    Posts: 58
    DavidLeeK HB User
    Re: how long have you been living with MS ?

    i was dx'd june of this year, symptoms go back to 2002, this relapse kicked my butt, i am off work right now, could barely use my right leg, neck/arm/hand went numb, motor/coordination problems on whole right side, tingling from chest to toes on left side, bladder issues, etc etc

    so far been since may 10th of this attack, did steroid treatment awhile back, my legs have gotten much better, my feeling is coming back in my arm, shoulder and neck, hand/fingers are still pretty numb but coming back, bladder is getting easier to hold, left side is better except below my knee, it burns, etc

    Old 09-04-2008, 11:45 AM   #7
    Join Date: Nov 2007
    Posts: 1,565
    Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
    Re: how long have you been living with MS ?

    I have been diagnosed for 22 years at the age of 25 (1986). Symptoms since childhood (before teens).

    I don't work, a decision made long ago and has nothing to do with MS. I don't consider MS as affecting my life, I incorporate it into my life. I had 2 children after I was diagnosed, I have been known as a soccor mom, I have done carpooling, I go camping, shopping and keep my home and family running on schedule.

    There are alot of things I do inspite of this disease and some things that will have to wait or be put on hold because of this disease. This disease is about adapting and adjusting when or if needed.

    Old 09-04-2008, 11:47 AM   #8
    Junior Member
    Delilah008's Avatar
    Join Date: Aug 2008
    Location: PA
    Posts: 35
    Delilah008 HB User
    Re: how long have you been living with MS ?

    I was diagnosed last June and have been working full time until this past week when I had another exacerbation. I've probably had MS symptoms since I was 19 but dismissed them or attributed them to stress and not getting enough sleep.

    Last year's symptoms were mainly tingling and a little stumbling after I'd been sitting for a while. Since I had a mostly sedentary job, it was no problem to work throughout the exacerbation (although I was completely exhausted the entire time).

    This time though I have a very active job that requires rigorous movement, goffering stuff, and maintaining an ideal environment. My left leg is still going out on me for no reason and I'm no safe to work at my current job. It looks like I'll be out of work for at least 2 weeks or more. I'm hoping everything gets back to normal soon 'cause I really cant afford to be out of work so long.

    (Thank goodness I had the foresight to sign up for short term disability at my new job.)

    Old 09-04-2008, 12:11 PM   #9
    Junior Member
    murph154's Avatar
    Join Date: May 2007
    Location: Colorado
    Posts: 47
    murph154 HB User
    Re: how long have you been living with MS ?

    I had my first exacerbation in March of 07, 2nd in September of 07 and was diagnosed in October of 07. Other than fatigue and temporary foot drop (went away w/ the help of solu medrol), I've been okay (KNOCK ON WOOD!). I work full time and have 2 kids (ages 7 & 3, just like Anxiousme). The fatigue kicks my tail some days, but that's about it.

    Old 09-04-2008, 02:09 PM   #10
    Senior Veteran
    sunshine149's Avatar
    Join Date: Jul 2004
    Posts: 615
    sunshine149 HB User
    Re: how long have you been living with MS ?

    I've had MS for 11.5 years. I work full time, garden, have a boyfriend of 15 years and a cat. I live an active life but sometimes notice my energy level doesn't meet my expectations especially when it comes to gardening and my other love, writing-

    Old 09-04-2008, 04:33 PM   #11
    Senior Veteran
    april1848's Avatar
    Join Date: Oct 2007
    Location: Ohio
    Posts: 942
    april1848 HB User
    Re: how long have you been living with MS ?

    I write too, Sunshine!

    I was diagnosed 9/10/07, but with hindsight, I've had symptoms since my teens, so who knows? When I was diagnosed and had to do IV steroids, my boss at the time started being a jerk. I felt like crap, I was miserable at my job, and I was dealing with the fact that I had MS--it was a surprise. As far as jobs go though, MS affected me for the better. I quit my old job and got a new one that I love, and it's a job that will be easier to keep if/when my MS gets worse. I think that I might have stayed at the old job, being miserable, if MS hadn't changed my perspective on things.

    MS has made things rough with my family, to a certain extent my husband (he's getting better) but not with my friends. It's definitely made a negative impact on our finances.

    I work full time, I work for a political action committee on the side, and I take care of the house and shopping. I don't have kids, but I have a stepdaughter (15 last week) who is here every Sunday and Monday. Fatigue and sensory symptoms are the biggest symptoms. But I am still able, on most days, to do the extras like gardening, reading, and working on my book. MS has gotten me to exercise too. I try to do it every day, even if it's just for ten minutes.

    This is an issue that I've been thinking a lot about lately, since my one year anniversary is coming up. Overall, MS has affected me in a good way. I look at things differently; things that were important a year ago aren't anymore, and vice versa. I know who my real friends are, and I value them more. In the beginning I was a mess, but who wouldn't be? I still have my bad days and pathetic, pity-me-it's-not-fair days, but those are fewer and farther between now.
    dx 9/07
    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

    Old 09-04-2008, 07:23 PM   #12
    Senior Veteran
    Join Date: Sep 2006
    Location: USA
    Posts: 13,201
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: how long have you been living with MS ?

    Ive been officially dx just over 2 years now...and managed to do an MBA program while working fulltime right up until about 3 months ago> The degree, I got, and I finished valedictorian of my class,; however the job almost killed me. I was in territory sales and then the Director of marketing in the same company- by the time I got the promotion (right after I got the degree) I already knew I was in trouble trying to do "this" type of work. I left the company, started at another company doing only inside, desk job work and only 25 hours a week and Now im bucking to have them put me on fulltime! Its not the hours, its the type of work I did which kicked my butt. If you have a job where you can pace yourself, and have some support- keep it! If you are looking to change jobs, look for one which allows you things like flex time, or the ability to start late, stay late, and work around traffic issues- these things really tire you out and make a huge difference in your energy level when they can be avoided..
    good luck to you.
    RRMS- dx 05

    Old 09-06-2008, 07:02 PM   #13
    auctioneer's Avatar
    Join Date: Jul 2008
    Location: Post Falls, Idaho, USA
    Posts: 5
    auctioneer HB User
    Re: how long have you been living with MS ?

    I was diagnosed with MS two years ago this October. In 2006 I was told that I had a stroke, looking back, it was MS related. I have had leg pains, numbness, tingles, twitches, tiredness, tolerance, paralysis and more; too many things to remember for as long as I can remember. According to my MS specialist I have probably had MS for the past 25 - 30 years, maybe more. I have been on Copaxone for about a year. Today my symptoms are: Leg pains, Eye pain, left hand and forearm pain, right leg on fire and numb at the same time, so tired that I have taken a bout five naps today. I still work and travel a lot and it is getting tougher. We finished a project yesterday that we had been working on for about three weeks. When I finish a project and my adrenaline stops pushing me, I crash and crash hard. Today I am not worth much at all, but tomorrow I start a new project. For years I was able to push my self pretty well. Today someone pushes back.

    Have a great day,


    Last edited by auctioneer; 09-06-2008 at 07:03 PM.

    Old 09-07-2008, 01:07 PM   #14
    Stacy1403's Avatar
    Join Date: Sep 2007
    Location: Ontario, Canada
    Posts: 51
    Stacy1403 HB User
    Re: how long have you been living with MS ?

    Of course like most I realize symptoms I had been having for years were most likely related to MS, but I had my first symptom that raised concerns Christmas of 2003 at the age of 29. I had just graduated teachers college and was supply teaching in hopes to secure a full time job with my school board some day in the very near future. This first symptom I experienced was drop foot on my left leg. I found it really odd and thought maybe I had a pinched nerve causing this symptom. I went to my Chiropractor, who I have been seeing since I was a child, he found the symptom odd and suggested I see my doctor asap. Now keep in mind he also treated my aunt who had MS. I saw my GP within a day and she mentioned to me that she suspected the possibility of MS, she ordered a MRI that week. My MRI showed no lesions on my brain (yet) but had some on the neck area of my spinal cord. With in a couple weeks my symptoms cleared up (for now). Other symptoms I would soon experience are drop foot, fatigue, electric shocks down my neck and arms when I bent my neck forward, bladder problems, Chronic UTI, dizziness, unbalanced, loss of sensation in my feet, hands, trunk, face, tongue, numbness in my feet, hands, trunk, face. I had a really bad relapse that fall of 2004 to the point where I was literally laid up for 3 months. Along with the symptoms that I already mention (x100), I also experienced some paralysis in areas of my legs which greatly affected my walking and had trouble with holding things in my hand to the point where I could not hold a pen and had trouble using a knife etc. These symptoms lasted so long because it started on my left side and then when they started to get better, I experienced the same problems on my right, but not quite as bad. That October 2004 I was finally diagnosed and started Avonex. During the period of the really bad relapse I did not work, but all of the rest of the time I continued to supply teach which I found very difficult due to fatigue and that I now had to use something to aid my walking because I had a lot of trouble with distance and standing for a long amount of time. I still have some trouble with my left food not being as strong and when I get tired will walk with a limp.
    I continued to work up until October of 2007 when I finally could not handle it anymore. I feel to this day that maybe if I had been hired on full time before I felt the need to quit, I might have been able to continue for the fact that I would have my own classroom and be able to make accomodations that would help me continue my days. However, with having to supply teach and go to different classrooms and different schools on a daily basis, I did not have that choice. I really miss teaching and keep my membership payed for and up to date in hopes that one day I could go back, I guess we will see.
    When it comes to family, I am single with no children, but for my parents etc. they seem to be fairly supportive. Sometimes, I feel like they think I'm being lazy or something when it comes to me not working. They have never said that to me, but I just sometimes get that feeling, but maybe it is all just in my head??? Another thing that really gets to me is...I mentioned earlier that I had an aunt with MS and it really annoys me when I get compared to her and things are said such as "Your aunt never experienced ..." or when people say to you while I know this person with MS and they are fine, and this is what they do, etc. etc. etc.... I wish people could understand that just because your friend looks fine doesn't mean that they are not have problems and secondly just because so and so doesn't experience a certain symptom doesn't mean I don't. But as much as you tell some people this it doesn't get through there head.
    Anyway, I feel that I have rambled on long enough, but it feels good to talk about it. I think it comes down to the point that MS effects us all in different ways. We just all need to make the best of it and keep on with our lives and I think for myself, I need to work on that a bit.

    Last edited by Stacy1403; 09-07-2008 at 01:07 PM.

    Old 09-13-2008, 04:54 AM   #15
    TylerMS88's Avatar
    Join Date: Sep 2008
    Location: Parrish, FL, USA
    Posts: 9
    TylerMS88 HB User
    Re: how long have you been living with MS ?

    I was diagnosed in 1988. After retiring from the military, I went to school and worked full time for the next four years. I was in a relapse-remitting stage at that time. I have continued to work in high stress sales jobs for the last fifteen years, until my MS got to the point that I could no longer work. I have had problems with double-vision, muscle paralysis, bladder and bowel problems as well as fatigue. I have kept an active life with my wife and two college-age daughters. Learn to know your limits and stresses or you will make your situation worse. Keep track also of any foods that cause any adverse reaction. Continue to exercise, don't lose your muscle tone. Work when your body is in it's optimal condition, rest when it is not. Depression can creep in, so stay active and connected to others who keep you in a positive mind frame. Faith has helped me immensely get through some of my darker hours. That's all the pearls of wisdom I have gleened from my 20 years or so with MS. Good luck, Stay positive and feel free to ask any other questions! Tyler

    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Sorry So Long... Need advice about possibly jealous boyfriend? cakelikethatdog Relationship Health 1 01-05-2008 01:25 PM
    How Long Can He Last Like This???? mamaduck4 Alzheimer's Disease & Dementia 6 07-18-2007 12:54 PM
    Need help, thoughts, anything LONG POST (cheating wife) onyR Relationship Health 19 08-13-2005 04:05 PM
    HIV/AIDS & Long-term survival! sofreeradical HIV/AIDS Living With 7 08-07-2005 12:44 AM
    I had my LEEP today mysterious76 Cancer: Cervical & Ovarian 12 12-24-2004 01:39 AM
    Question about long term relationship & marriage... cricketchicket Relationship Health 18 10-18-2004 12:18 PM
    anyone else have this happen? (oops long) serialnovelist Herpes 5 04-07-2004 12:11 PM
    The misinformation surrounding Alzheimer's Disease: (Long) gizmolove Alzheimer's Disease & Dementia 5 01-29-2003 11:02 AM

    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off

    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 02:48 PM.

    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!