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Daily Dealing

  • By WesWill

     
    I was recently diagnosed with MS, realize now I have been dealing with it for a years but have called it other things.  I am not in remission and I can surely tell.  I have major numbness and pain in hands, feet, legs, chest or a combination of some or all.  Hands are always to some degree numb and hurting.  I have found that I feel better the later I stay awake at night. I have also found that I begin to feel better when I spend a few hrs doing simple hobby projects that require enough thought to be engaging, but not enough physical accuracy to get frustrating. BUT I can’t do that at work, so can anyone offer suggestions, personal methods, hints, best practices or tricks for dealing with the symptoms to help those of us that are still relatively new at this.  I have to keep my job, that means I have to function, even when I can’t feel things in my hands.  Thanks
     

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  • By Cathy Chester Moderator

    Wes Will,

    The first thing is to get on an FDA approved medication (such as Avonex, Betaseron, Copaxone, Tsyabri, Rebif, etc).  You’ll need to find a doctor with experience in MS.  Talk to him about your choices (perhaps do some research beforehand) – but get on a medication soon.

    Second, pace yourself.  You want to notice when you feel fatigued and try to plan your day around it.  Most people with MS find fatigue their #1 complaint.  Being able to rest when you can will recharge you to work on whatever needs to get done during your day.

    Consider finding an Occupational Therapist or Physical Therapist who can work with you regarding your hands.  Ask your doctor for recommendations, and check with your insurance company as well for coverage.  I’ve found in the past that a good OT and PT help sus with our daily living, and are a crucial part of our MS team.

    The National Multiple Sclerosis Society (www.nmss.org) is a good place to ask any other questions you may have.  They also offer support groups and educational seminars. MultipleSclerosis.net offers a wealth of information as well.  Communities such as this one help us feel less alone and filled with useful information.

    I hope this helps, and I wish you the best of luck and good health.  Please keep us posted.

    Cathy

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  • By WesWill

     
    I’m on the meds and something to help with numbness and pain.  I have a GREAT doctor that is helping and staying in contact with me, including calling me after office hours. 
     
    I’m working the pacing myself part.  I was always the poster child for ADHD and have2 – 14yr olds that have enjoyed having a very active dad, but that has been severely impacted. I am my own worst enemy most days because I don’t fully know or accept my current limitation.  It is good to know it is NOT just me.  These groups are helping.
     
    I will talk with the Dr about an OT or PT to help.   I have a PT that goes to our church that has already offered to help.
    I have joined several of the MS groups and am trying to weed through the massive amounts of information.  The hardest part is trying to find groups that have positive information.  A lot of what I have found so far is people complaining about having MS but not trying to overcome MS.  Hence this forum post, Daily Dealing.  I have been dealing with MS for years, in ignorance because I did not know what I had.  Now I want to move forward and learn how to deal with this and still be a Husband, Father, Man and function in my daily activities at work and in life.  I don’t want to feel like life is over, which is the frame of mind I have noticed, both online and the actual people I have met, have fallen into.  Each day I want to go to sleep having felt like I am dealing with or overcoming  MS not giving in to it.

     

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  • By Cathy Chester Moderator

    You are doing a fabulous job, Wes Will. You know there will always be doom and gloom people with negative attitudes.  You are right – you need to weed out those groups and find the good ones.  I’ve left many groups, over the years, because their attitudes were toxic to me.  Keep searching – the good ones are out there!

    I’m so glad you love your doctor – that is everything!

    If you’re finding you’re having trouble, or any depression, perhaps you could seek some counseling.  Therapy, and perhaps a medication, may help ease your load.  It’s common to have depression with MS, and taking the edge off of any uneasiness you have (like many others with MS do) may be beneficial for you.  I’m not a medical person; I go to therapy and it’s helped tremendously. No shame in helping yourself toward wellness. (Someone once told me that and he was right)

    Keep us posted, and good luck in your journey.

    Best,

    Cathy

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  • By ydress

    Hi Wes Will

    To start with everyone is different when it comes to handling MS. I was diagnosed 9 years ago.  The first 3 years of my diagnoses I was on 12 prescription pills a day and daily injections of Copaxen.  I really thought with the alternative treatments I was doing every week first ,Jin Shin Jytsu http://www.jsjinc.org for the first 3 years, now Chinese medicine once a week at my house for the last 5 years, both treatments once a week helped with the emotional side of MS and relaxing.  The last 5 years I decided to stop all my medication and injections because  JSJ once a week for 3 years made my 3 brain spots just disappear. My MS doctor was shocked and could not believe it.

    I ate better and practiced Bikram yoga daily in a room 105 degrees, this yoga gave me energy and feel accomplished after every class. It was the hardest thing I did all day however it made the rest of my day much easier to deal with. I also  worked out with a trainer 3 times a week for 2 year too.

    I am married, with the same man for 26 years now married 16 years, we have a 12 year old son. I had him at the age of 40 and was diagnosed with MS at the age of 43. I had my own successful business in fashion and my husband and I opened a few stores together. Once I was diagnosed with MS I eventually stop working. Hardest thing I ever had to do. I’m so Thankful my husband runs all our businesses. I’m 52 years old now and keep a positive attitude having a life long illness. It’s been very hard on my husband and son, because of my illness they have a very special bond. That is the silver lining for the two of them. It’s very difficult to be a wife when you feel sick, sex is the first thing to go unfortunately however since we have been together so long it makes that part a bit easier.

    For the last year I was stuck with 3 episodes in less than 6 months, I have had 2 MRI’s, 2 three day steroid infusions, put on 2 antidepressants to help with depression (Wellbutrin & Venafaxcin) This combination works for me. It was hit a miss for months. I’m not longer depressed however I have been severely fatigued for months, all I did was sleep all day and night. My body went through so much with 3 lesions , one on my T2, one on my C5 and one on my brain. It wiped me out, I was so sick and did not know what to do. Even my MS doctor has never experienced anyone she worked with having this level of severe fatigue. I am now taking Adderall for the fatigued and it helps. Sometimes I have to take it twice a day. MS can really throw you for a loop when you least expect it.

    I find the drug that helps me relax, take away numbness out of right hand and the pain in my neck is Xanax. If you take it in the evening it helps with sleeping peacefully all night. I take Xanax at least twice a day with all these drugs I’m on now. My life has changed drastically this past year however I know it can be a lot worse, so I am grateful. I will be starting the BG-12 in 4 months, this is the new FDA approved pill you take twice a day, to slow down the progression of this horrible illness 46%. I just do not want to go back on injections, so I have been waiting for my MS doctor to start me on it. Unfortunately even though it was approved April 28 2013, it is so hard to get, I have to wait anther 4-5 months to start. I just pray as i’m waiting I get no more lesions.

    So my most helpful medication is Xanax and as far as something to look forward to, my Chinese Medicine therapist once a week, she does massage, cupping and acupuncture. I’m very Thankful I do not have to work, my husband does just about everything, especially this past year because of my severe fatigue. Now I need to loose the weight gain from lack of movement and ease my way back into the real world. Not an easy thing to do when you have been out of it for a year.

    I’m looking for a positive support group that wants to walk everyday in the Marina. I live in San Francisco, we have a beautiful beach trail that is 5 miles.

    9 years sill looking for a great group of people to hang out with in San Francisco.

    Good luck with your journey and staying positive, eating right and fitness is a big part of staying well. Easier said than done.

    ydress

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