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  • gaz-flinn

    I am a 42 year old male diagnosed with RRMS 9 years ago , i work full time and do emergency out of hours calls too , my average day is 10 hours long and is a mix of driving and service calls . Work has become harder and despite one bad relapse a year ago ive been very lucky "thank god" . I have multiple symptoms and have done since i started on copaxone ( due to positive JC virus test) . I suffer with hand tremor , frequency/urgency of urination , constipation , really poor balance , constant pain across my abdomen and severe back pain , also fatigue when walking any distance . Is anybody else in a similar position ? Its pretty tough going !

  • adamlev2000

    Gaz-flinn,

    I am 44 and was recently diagnosed this summer. I can't give you any advice other than to say that you are correct that you've been lucky. It could ALWAYS be worse. The fact that you are able to work 10 hours per day is a testiment to your positive attitude.

    I recently met a gentleman at a MS support group meeting who was diagnosed 50 years ago. Although he uses a wheelchair, he has a great perspective. He also is blessed to have dedicated family to help him out. 

    It would appear from your post that you are adapting. I think the ability to ADAPT and keep a POSITIVE ATTITUDE would be the secret. 

    Good luck, bro.

     

  • gaz-flinn

    Thankyou for your comments , yeah im adapting every day because every day is different , im always looking for ways to improve my symptoms but being perfectly honest i kinda just get on with it , ill work until i cant any more . I couldnt afford to stop work anyway . There are people i know far worse off than me and i take my hat off to ANYONE that lives with Ms because everybody copes with every symptom differently . I just wish there was a way to let healthy people experience what sufferers experience everyday , "you look fine to me" wears a bit thin .

  • MS_Sucks

    "I feel your pain" as they say. I've had MS since 1988 and probably before. Lower back pain is just that, a PAIN! I've found that just doing a few simple exercises a day makes a lot of difference. Google "Cat Cow Cobra poses" and then do ten reps in the morning and ten at night. See if this helps and then add more reps. I've found that the Cobra pose really loosens up your back and makes walking/keeping upright easier. 

    Hope this helps.

  • Noontide

    Been dealing with MS for  over 26 years and back in the beginning things were really bad. During the past 5-10 years been dealing with mostly the same syptoms you describe. I also need to keep working and work 9-10hr days. Bottom line is don't give up try to keep living your life as it was befor MS or better. Keep the social aspect active. I think that is key. I enjoy sailing and get out on the water in one way or form every weekend. Recomend you find a hobby that keeps you busy and enjoy it as best you can.

  • pattyann

    I feel so fortunate to have found this site, and so stupid that it took me this long to get here.  I do have a suggestion for your mom.  I shared the "Invisible Symptoms" video they have as a link on this site.  Like another person shared - family seems to "get it"  or believe it when it comes from an outside source.  At lease it helped my parents to understand it is a real thing.  But saying that, I don’t think you can really understand it unless you are experiencing it.  

    To be selfish and use my own situation as an example -

    I have had MS probably since I was 19 or 20.  I am now 55.  But it wasn’t until these last couple months - when the Cognitive and Fatigue issues became so bad that the words people have been saying about how they feel and how it affects their life became real for me.  

    After my worst crash (doc says exacerbation, I think new injury ) my fatigue became truly debilitating - that along with extreme cognitive challenges have me unable to go back to work.  As I was sitting in a chair feeling like my great grandmother sitting in the hall of a retirement home, unable to even think of sitting up straight, let alone getting up and moving - I felt like I finally understood what everyone was talking about.

    Although I said that my family now seems to get that the fatigue is a real thing, I have other symptoms (more visible).  Those new mobility challenges aren't stopping me from working - But to my family (and even some of my doctors) they think the real issue is the mobility and accommodating that will get me back to work.  Walking with a walker and AFO on a good day and wheelchair on a bad day is really a non-issue for me in comparison to the affects the fatigue and cognitive issues are having on me.  People say that it will get better – and the fatigue is often better than at my worst… But the cognitive issues seem to be getting worse. 

    But let me jump now  to support my family a minute to say - I don’t really get it, the ups and downs and ever changing symptoms, so how can I expect my family to.  This is a crazy disease we all have~

    Thanks for letting me vent.  And thanks for sharing here.  It means a lot~

  • acajharris

    I was diagnosed in the begining of 2012 by a doctor who hadn't even seen an mri on me and this doctor shortly left the organization so I was moved to a different doctor.  My doctor is awesome (I hate doctors too, they should all have a magic wand to make us instantly better) she immediatly sent me for an mri so it was the summer of 2012 when that was done.  My doctor showed me the scan and explained it saying if she had never physically seen me she would have assumed I was bound to a wheelchair because my brain and spine are full of lessions.  She told me that I needed to change jobs so that I wasn't on my feet all day because she could see me in a wheelchair in short order if I didn't.  I finally got a new job this past September where I'm am desk bound but I do get up a few times during the day to do things and move around because just sitting makes things worse.  I used to work 10-12 hour days now I work 8 hour days and this has helped me a lot, like you I have to work and I know if I didn't I would go insane and I think I would get worse.  Keeping busy knowing you can support yourself and your family helps us deal.

  • capitolcarol
    Wow, what you mentioned and are going through are exactly what I go through too.  I'm on Tysabri though, but everything else is the same.  How are you doing these days?  .  
  • tnigro70
    Yes! I go through all those symtoms every day!
  • alvinac
    I'm experiencing some of your symptoms. I have lower back pain, but it usually happens when I'm driving or sitting for too long. How's your back pain like?
  • lovitadanielsallen
    I'm also experiencing the back and leg pain.  I found what helps me to go on a day-to-day is my support system that I'm around.  I also found out if I'm around a lot if negitativity it makes my pain worse.  The key is to b around positive atmosphere it' better for us.
  • brun
    I'm starting to think Copaxone is to blame (poor attempt at humor). I had to switch to Copaxone after my JC test came back positive, and ever since I've had a never-ending stream of symptoms. I was basically symptom-free the entire time I was on Tysabri. In the 6 months I've been on Copaxone, I've had 2 flare-ups. The most recent one started around New Years and I'm STILL in the process of recovering. Pain, fatigue, hand tremors, weakness...yup. All there. My neuro is actually switching me to Gilenya, and hopefully that will bounce me back to normal. Maybe another medication would also help you as well.
  • g-buda
    I agree with the copaxone bringing on symptoms. I truly believe it is the reason I am as disabled as i am. I'm sorry to hear if all your issues. I have been going to physical therapy and dry needling for about three months now while being drug free except for depression and anxiety and flowmax pills. And really have seen huge results. It nay be worth a try for you. If you want more details please message me I will help all i can.
  • mauralipp
    Yup, I'm right there with you and can certainly feel your pain! (literally)  It's perhaps the hardest thing to deal with when you are still trying to work as you always have.  That's all I want to do.  Like you I'm 42 and still working full time.  On average I work anywhere from 70-80 hrs/week.  I don't want to be be the one that can't keep up.  If I can't do it, my partners have to pick up the slack.  They wouldn't mind, but I do!! 

    I also have RRMS but many symptoms are  daily now.  Almost the same as you, intention tremor on my R hand, bladder sx's (urgency and frequency), dizziness/vertigo, fatigue and leg weakness particularly with getting up out of a chair and walking up stairs.  Some days I walk very slow and legs are stiff, muscle buring and cramping in my thighs and hips. I fell 3 times last year due to muscle weakness.  I haven't fallen in about 8 months though thankfully. I'm exercising more which helps and despite all that, still not in need of any devices.  I have bilateral trigemenal neuralgia with near constant numbness in my face and tongue.  The pain part is controlled however with tegretol thankfully. I'm taking provigil for fatigue and cognitive symptoms which has really helped my ability to work.

    Do you ever wonder though that pushing yourself to work this way is making the symptoms worse?  You have to assume that it is, but I don't see any other alternative.  Psychologically I'm not ready to "down shift" and won't be for a time to come.  It's a double edge sword, how to you balance it all out I wonder?
  • cswadsworth
    I have also had MS a long time and have most of the symptoms you describe. Just a heads up, I had extreme leg weakness issues and it was a side effect of one of my meds taken for spasticity. Once I switched medicines it got better. 
  • sparky621
    Keep going Brother!! I was dx'd about a year ago and am on tecfedera. Like you I work full time and the symptoms are getting harder to deal with. I have gait issues, fatigue, occasional cognitive dysfunction. I plan to keep working. If I can improve my gait and fatigue.
  • kimberlyburdette
    sparky621 wrote: Keep going Brother!! I was dx'd about a year ago and am on tecfedera. Like you I work full time and the symptoms are getting harder to deal with. I have gait issues, fatigue, occasional cognitive dysfunction. I plan to keep working. If I can improve my gait and fatigue.


    I was just diagnosed with MS in January 2016 (I know I've had it since 1989).  I have been steadily going down hill since 2015 which made me seek a 2nd op from a Dr in Atlanta specialing in MS.  Sent me for MRI's after looking at my 2014 MRI showing lesions (other doc said it was due to my migraines and the last neuro said ABSOLUTLY NO MS!!!!!- yes, 5 exclimation points...really? I would like to shove my test results up his butt...just sayin) also sent me for spinal tap.  I only have 2 lesions in the brain and 1 on spine and positive for the spinal tap (5 bands).  Even though I have a low lession load I'm all kinds of messed up (which my doc says he sees some times and visa versa (large loads little issues).  I walk with cane, drag my left leg, the pain is off the charts most days.  But....I've had a failed back surgery in 2013 and I have Fibro, chronic migraines, raynaulds, bad discs in neck, arthritis in back and neck, antiphosphlipid antibodies, hashimoto's, Trigeminal neuralgia, cramp fasiculation and vertigo.  
    Like I said, since 2015 I have rolled down hill.  I can no longer work (since 2010, that was due to back and other issus); I can no longer enjoy the walks on the beach with the hubs or short walks at the park.  No longer enjoy the golf cart rides, or riding 7 hours down to florida to see family.  I am constantly in pain and dealing with MS issues. I thought maybe this is PRMS but doc says no due to me presenting with new issues.  I thought from all the research I've done that the symptoms are suppose to go away within a few weeks/months.  I'm going on over a year!  The gognative issues are getting worse and the falling and dropping things more frequent.  I also have horrible depressed moments due to me not working...I use to work 2 jobs some times and work 50-60 hours a week.  I went from that to 0 in 1 day!  And if I have to hear how "lucky" I am not to be working I'm going to smack a person!  This is no life to have...sitting/laying around trying to find things you can do without severe pain or laying around not being able to mustur up enough energy to get up and go to the bathroom!  Nope, not something I foresaw coming...not for me but it did and here I am.  Some days are better than others and some days I do have a pitty party but I see others (went to my very first support group and there was a person younger than me in a wheel chair) that are worse off than me so I deal.
    Sorry...looks like I ranted...the short answer is yes I feel like you every day...how you are working I do not know but KUDOS to you for being able to!  I hope you have relief from your pain soon!
    K
  • jandj400
    I was diagnosed may 2011 i do have multiple symptoms i have constipation and it im not constipated i have accidents, i cant ealk long distance my legs and back give out, headaches all the time, feeling of hsve to pee alot,feel nausea all the time and really bad pain in my legs constant throbbing. I try to stay positive but its hard cause i feel im withering away
  • jandj400
    And also i didnt start having tremors untill they put me on copaxone i stopped taking it and dont get them anymore
  • g-buda
    I agree with the copaxone bringing on symptoms. I truly believe it is the reason I am as disabled as i am. I'm sorry to hear if all your issues. I have been going to physical therapy and dry needling for about three months now while being drug free except for depression and anxiety and flowmax pills. And really have seen huge results. It nay be worth a try for you. If you want more details please message me I will help all i can.

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