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    Old 12-17-2013, 10:25 AM   #1
    Zach4486
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    MS Lesions

    I'm 46, male, just diagnosed with MS after waking up with the case of Optic Neuritis. Once I had the MRI done, doc found "20-30" lesions. No MRI on the spine. Okay, so I traced back when all this may have really started.. about 8 years ago. I had ON once before but it went away and the eye doc just said "you're getting old, losing your vision". Yeah. Sure.

    I'm on an experimental drug, I don't even know the name of it. I have weak legs, bottom of feet always numb, knees weak, getting shakes in upper body and legs. Symptoms get worse the more tired I become.

    I asked the doc how long I have-- he said "no one dies of MS anymore". Yeah. I do know this, I will never go on methylprednisolone again, that is an evil, evil, evil, evil drug, IMHO.

    Question to the group: Does anyone have similar symptoms/experiences? I can't get a straight answer out of the Doc, I'm hoping to get more of a hint from those who have the disease. The doc says I'm too "new" for diagnosis for a "type" to be assigned, I have to wait 1 more year and they can compare MRIs. What I'd really like to know is how much WORKING time do I have? Should I start thinking of retirement/disability (I'm an engineer, I kind of need the noodle to be working right)? I do have concentration issues... not too bad, but noticeably worse.

    Thanks for any advice you can render...

    Last edited by Administrator; 12-17-2013 at 01:41 PM.

     
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    Old 12-17-2013, 02:01 PM   #2
    MSJayhawk
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    Re: MS Lesions

    Zach4486,

    Welcome.

    ON is a symptom which affects about 20% of MSers. Some people never develop beyond ON and ON can be a standalone disease.

    ON can be missed, too, as it appears to be what may have happened to you.

    It is difficult to know if you are describing side effects of the experimental drug or if it is the course of your MS progression. The study to which you are in should be made aware of any potential side effects in case you should need to be removed from the experimental drug.

    Your doctor is correct. While MS is chronic, it is not fatal. As the disease progresses, MS caused symptoms can lead to injury or death such as falls, etc. Adaptive equipment can help prevent these accidents and injuries. Sometimes an activity simply has to be removed from your life.

    If you keep a symptom journal and you graph your life and MS, you will be able to better see if you are progressing towards a "type". Regardless of your MS type, it is still MS. If you are progressive, meds are typically ineffective and a waste of time.

    As long as your mental workouts are not affected by MS, you should not have to worry about disability. If your cognition becomes a problem and you cannot get sufficient mental rest, then you would be faced with a disability decision. I enjoyed a career before my MS worsened to a point that it was adversely affecting my job. I took the step towards disability before I did any damage to those around me. The decision for disability is a personal decision, but you can also consider lateral moves or even a second career.

    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Old 12-17-2013, 04:01 PM   #3
    Snoopy61
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    Re: MS Lesions

    Hi Zach4486,

    MS is an unpredictable disease and the course of the disease is different for everyone.

    Quote:
    I have weak legs, bottom of feet always numb, knees weak, getting shakes in upper body and legs.
    You might consider getting a referral to a Physical Therapist (PT). PT and exercise can be helpful for weakness, strength, endurance, memory, pain, stiffness, and fatigue.

    This is something that needs to be done consistently and it can take time to tell if PT/exercise will be helpful for you. Give yourself time to see if any or all of your symptoms will resolve.

    In my case the first 2 years were pretty difficult. At the time of diagnosis I was in a severe exacerbation (relapse, attack. flare-up). It took me almost a year to get back to baseline then at the one year mark I had my second severe exacerbation --- quite frustrating

    Quote:
    Symptoms get worse the more tired I become.
    This is common when having MS. You will also notice an increase of symptoms due to heat and/or cold, infections and viruses, if you overdo it or do more than your body can tolerate.

    Quote:
    What I'd really like to know is how much WORKING time do I have? Should I start thinking of retirement/disability (I'm an engineer, I kind of need the noodle to be working right)?
    No one can give you an answer --- sorry. Some work for many, many, years others do not. This is truly a "wait and see." MS symptoms can and improve for many but others are progressive and do not see improvement.

    Quote:
    I asked the doc how long I have
    I don't know about you but I simply do not consider that question, I prefer to enjoy what I can for as long as I can.

    I was diagnosed at the age of 24. Symptoms since childhood. I am now 52 years old and still very active.

    Take care!

     
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