Top Ten Common Myths about MS - Busted!!

Lisa Emrich Health Guide January 05, 2010
  • Multiple sclerosis is often misunderstood, and for many people, the very name suggests things like permanent disability and visions of wheelchairs. The truth is that MS is a manageable disease, and a great many people with MS live active, fulfilling lives.  That said, the progression of multiple...

53 Comments
  • Vicki
    Health Guide
    Jan. 07, 2010

    Good post, Lisa.  It needs to be said.

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      Thank you Vicki,

      It took me much longer than I expected to try to highlight the most important (and generalized) misconceptions of this disease.  In the process, I eliminated a few points which are also important.

       

      Just want to mention that I see you as leading a fulfilling life no matter what disability you have accumulated over the years. ...

      RHMLucky777

      Read More

      Thank you Vicki,

      It took me much longer than I expected to try to highlight the most important (and generalized) misconceptions of this disease.  In the process, I eliminated a few points which are also important.

       

      Just want to mention that I see you as leading a fulfilling life no matter what disability you have accumulated over the years.  You are one of my many inspirations on what is possible to achieve mentally and emotionally while dealing with this (crappy) unpredictable disease.

       

      Check out the comments below.  Our community has lots to say on the subject.  Perhaps we can help them make their voices heard.  That will be the focus of next week's Question (minor change of plans). Do you have any ideas?

  • Karen Mobley
    Mar. 15, 2012

    My 41 year old son was diagnosed in 2000 with Multilple Sclerosis...he is now unable to walk (in a power chair), is incontinent, and shakes so badly he is unable to drink from a cup or feed himself....why is he so bad off?

    • Lisa Emrich
      Health Guide
      Mar. 18, 2012

      Hi Karen,

       

      I'm very sorry to hear that your son is having a more difficult time with his MS.  Males can often have more aggressive cases of MS.  Does he have more of his lesions in his spine?  This could affect his inability to walk.  Tremors are common with MS and can make feeding yourself difficult.  This doesn't happen to everybody...

      RHMLucky777

      Read More

      Hi Karen,

       

      I'm very sorry to hear that your son is having a more difficult time with his MS.  Males can often have more aggressive cases of MS.  Does he have more of his lesions in his spine?  This could affect his inability to walk.  Tremors are common with MS and can make feeding yourself difficult.  This doesn't happen to everybody however.  Is there any medication which helps to lessen his tremors?  Perhaps talk to his neurologist about what might be done to help.

       

      Does your son have primary progressive disease rather than relapsing-remitting MS?  If he does have progressive MS, then it is a slow decline without big ups and downs.  Unfortunately, there are not effective treatments to slow down progressive MS.

       

      Multiple sclerosis is such a variable disease and unfortunately some people have a more difficult journey.  I hope that your son is doing well though. 

       

      Please feel free to participate here anytime.  We have several members who are very helpful and willing to share their experiences and knowledge.

       

    • Cathy
      Health Guide
      Mar. 18, 2012

      Hello Karen,

       

      I am so sorry your son is suffering so from MS.  Do you have an MS doctor (neurologist who specializes in MS) who can better address the question of the type of MS your son has?  Perhaps he/she can explain to you which category of MS your son falls into, and also talk about any medications/complementary medicine that could address...

      RHMLucky777

      Read More

      Hello Karen,

       

      I am so sorry your son is suffering so from MS.  Do you have an MS doctor (neurologist who specializes in MS) who can better address the question of the type of MS your son has?  Perhaps he/she can explain to you which category of MS your son falls into, and also talk about any medications/complementary medicine that could address some of the MS symptoms he is experiencing.  If you are not happy with your current doctor, please ask for recommendations or call the National Multiple Sclerosis Society at 1-800-344-4867 or visit their website(www.nmss.org).

       

      I hope this helps.  Please keep us posted, and do not hesitate to ask us any further questions.

       

      You are in my thoughts,

      Cathy

  • tweener8292
    Dec. 26, 2011

    I was diagnosed with PPMS in 2009.  I do wonder what the breakdown is by race and what might be the factors involved...

  • MGreen
    Dec. 11, 2011

    Thank you for a great article!! I am a newbie!  I was diagnosed 6 weeks ago.  Dr's thought I had had a stroke, but found out it is MS.  WOW!  It is definately life changing!  I have lived alone for years, but have let my BF talk me into moving in with him!  I do think it is the right move, but it's hard to let go of your independence! ...

    RHMLucky777

    Read More

    Thank you for a great article!! I am a newbie!  I was diagnosed 6 weeks ago.  Dr's thought I had had a stroke, but found out it is MS.  WOW!  It is definately life changing!  I have lived alone for years, but have let my BF talk me into moving in with him!  I do think it is the right move, but it's hard to let go of your independence!  I just had a relapse last week and was treated with Steroid IV's!  Not sure I like that at all!  I'm going to really watch my diet and start excersising and see if that helps!  Thanks again!

    • Lisa Emrich
      Health Guide
      Dec. 12, 2011

      Hi MGreen,

       

      Welcome to the club (but sorry to hear that you've been dx with MS).  Sounds like you've got a great boyfriend.  Very supportive.  Hang in there....the solumedrol treatment is pretty intense and it may take awhile before you feel like yourself again.  It usually takes me 2.5-3 weeks before I feel good again. 

       ...

      RHMLucky777

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      Hi MGreen,

       

      Welcome to the club (but sorry to hear that you've been dx with MS).  Sounds like you've got a great boyfriend.  Very supportive.  Hang in there....the solumedrol treatment is pretty intense and it may take awhile before you feel like yourself again.  It usually takes me 2.5-3 weeks before I feel good again. 

       

      Learn all you can about this disease but take your time.  There is lots of great information here so have look around.  Glad you've found our community.  Welcome.

       

      Lisa

       

  • Anonymous
    traumamama
    Aug. 29, 2011

    I have a dear male friend, who was diagnosed with MS at age 29. He is now 64, goes to the gym, walks his two dogs, has an active married life and a career and freelances as well.  He does n ot do well in the heat and sometimes if he does too much, his MS will flair up and he is wracked with needle like pain throughout his whole body. But he is totally...

    RHMLucky777

    Read More

    I have a dear male friend, who was diagnosed with MS at age 29. He is now 64, goes to the gym, walks his two dogs, has an active married life and a career and freelances as well.  He does n ot do well in the heat and sometimes if he does too much, his MS will flair up and he is wracked with needle like pain throughout his whole body. But he is totally mobile, active. BTW, he has survived a slight bout of Prostate Cancer, but also survived that and is now cancer free. He is also on the latest medication which is quite costly, but has a good health plan at work which helps him with his many meds.

  • Anonymous
    Anonymous
    Jul. 28, 2011

    Hello everyone, did anybody hear anything positive about the Ameds CCSVI clinic in Poland? Website looks promising but not sure it's worth going all the way there before I'll read some real testimonials about their clinic.

     

    I'd appreciate your help. Here's the website: www.ameds.co

  • laurjean
    Jul. 12, 2011

    This is a great synopsis!

     

    It would be nice if the life insurance industry would adopt the views of the medical world. Still considering MS to be life threatening, they are reluctant to grant lilfe insurance to one with MS. It is truly nutty!!!

     

    Thanks!

    • Lisa Emrich
      Health Guide
      Jul. 12, 2011

      Hi laurjean,

       

      That would make sense.  If MS is not directly life-threatening, then it shouldn't be prohibitive for life insurance.  I haven't even tried to get life insurance because I know that it is probably impossible or outrageously expensive.  Have you?

  • Anonymous
    Genie
    Jun. 25, 2011

    We believe these are associated withthe meds. she is taking. She takes Avonex and has headaches all week after her injection.  She has tried some meds that cause her to gain weight and does not really keep them away.

    Her insurance doesn't cover headaches. what can she do to get some relief.? Thanks, Genie

    • Lisa Emrich
      Health Guide
      Jul. 12, 2011

      Hi Genie,

       

      Thanks for your comment.  I'm sorry to hear that your wife has such bad headaches.  Do you think that they are related to the Avonex shots?  Does tylenol as a pre-med help any?

       

      What does the neurologist say about the headaches?  Are they officially migraines and is there a different treatment which could be tried?...

      RHMLucky777

      Read More

      Hi Genie,

       

      Thanks for your comment.  I'm sorry to hear that your wife has such bad headaches.  Do you think that they are related to the Avonex shots?  Does tylenol as a pre-med help any?

       

      What does the neurologist say about the headaches?  Are they officially migraines and is there a different treatment which could be tried?

       

      Hopefully your doctor can work with the insurance company to properly treat your wife's symptoms.  Good luck.

       

  • Anonymous
    Maureen
    Jan. 16, 2010

    Lisa,

     

    Great article!  I was diagnosed with MS two years ago and stumbled across your article.  Great information - thanks!

     

    Maureen

  • CJ Lyrical
    Jan. 15, 2010

    I knew a few people who were healed of ms by changing their diets and the type of foods they ate. This lady I know had 62, symptons and was bed ridding and in a wheel chair, she no long have any symptoms or in a wheel chair, all because she changed her diet and foods. (she lost 100lbs also)

    • Lisa Emrich
      Health Guide
      Jan. 15, 2010

      Hi CJ,

       

      It's good to see you again.  How are you doing lately?  It's very encouraging to hear stories of folks who saw results from changing their diets and food choices.  There certainly are folks who are able to manage their symptoms through diet alone.  There are also many folks who use diet and medications to treat their MS. ...

      RHMLucky777

      Read More

      Hi CJ,

       

      It's good to see you again.  How are you doing lately?  It's very encouraging to hear stories of folks who saw results from changing their diets and food choices.  There certainly are folks who are able to manage their symptoms through diet alone.  There are also many folks who use diet and medications to treat their MS. 

       

      It's wonderful that we have information about the different options we can take, especially the detailed information about various diets used by MSers.  Personally, I think that I'm at a crossroads when it comes to diet and MS (and weight).  I'm not yet ready to make a firm commitment, but I am definitely learning what I can about it right now.

       

      I suspect that you might have a story or two to share about your own journey since diagnosis last summer.  I encourage you to do so in a Sharepost so that others can read about how you are making choices and how they are affecting you.  I'd love to hear it, too.

       

       

  • Michaelbgerber
    Jan. 13, 2010

    What a great article. We all need to send this to family and friends and keep it handy to send to others as needed.

     

    You also did something else. You gave us a forum, an opportunity to sharn feelings and experiences about living with MS. We are not alone and are all part of a larger community. Something that I have learned and am grateful for.

     

    ...
    RHMLucky777
    Read More

    What a great article. We all need to send this to family and friends and keep it handy to send to others as needed.

     

    You also did something else. You gave us a forum, an opportunity to sharn feelings and experiences about living with MS. We are not alone and are all part of a larger community. Something that I have learned and am grateful for.

     

    I am especially grateful mthat you are a part of that community.

     

    Michael

    • Lisa Emrich
      Health Guide
      Jan. 15, 2010

      Michael,

       

      It really is nice that this turned into a forum for the community.  Love that!  We have such potential to create community here and online in general.  Noone with MS should ever feel alone.  It only take sharing those experiences and feelings to find others who understand.  If nothing were ever shared, then we certainly...

      RHMLucky777

      Read More

      Michael,

       

      It really is nice that this turned into a forum for the community.  Love that!  We have such potential to create community here and online in general.  Noone with MS should ever feel alone.  It only take sharing those experiences and feelings to find others who understand.  If nothing were ever shared, then we certainly would be alone.  I'm glad that we're not....and I'm very much glad that you are part of our community here and in the MS blogosphere.  You generously offer such warmth, comraderie, and support.

       

      Thank you!

       

  • Anonymous
    Lisa
    Jan. 07, 2010

    I truley believ it is a managable  disability. I work 40 hours a week and sometimes more  I have learned to take notes due  to my shoet term memory loss . It is in there but takes some time to be able to pull it out .. So my notes at work help  I  have  a wonderful suport system and they are so patient and understanding they give...

    RHMLucky777

    Read More

    I truley believ it is a managable  disability. I work 40 hours a week and sometimes more  I have learned to take notes due  to my shoet term memory loss . It is in there but takes some time to be able to pull it out .. So my notes at work help  I  have  a wonderful suport system and they are so patient and understanding they give me time to get my thoughts together and the words out and  Iam truly  blessed. I work as a customer service represenitive for a Extended Stay  Hotel and I love it  I think it is what  keeps me going along witk my children.. And a up comming wedding in Feb 2010 I dont know if Illbe dancing but i will do everything  I can to be able to do the slow dance with  her father ..We will see

    • hmking4
      Jan. 07, 2010

      Your are blessed!  A lot of us are not.  You are so lucky to have a support system, a job where the employer supports you and not tries to get rid of you, and problems you have found a way to manage.  A lot of us are not lucky, not blessed.  We need assistance.  Before I was forced to quit, my employer got someone who had just been...

      RHMLucky777

      Read More

      Your are blessed!  A lot of us are not.  You are so lucky to have a support system, a job where the employer supports you and not tries to get rid of you, and problems you have found a way to manage.  A lot of us are not lucky, not blessed.  We need assistance.  Before I was forced to quit, my employer got someone who had just been diagnosed with MS to tell me about it.  She was like I was when first diagnosed.  Able to work without reasonable accommodation.  A year after my diagnosis, I was not able to work without reasonable accommodation.  Because my exhaustion was so severe, I needed to rest frequently throughout the day.  Employers often don't understand that someone with MS can be like you, able to work 40 hours plus with no accommodation or like me, able to work if I can be reasonably accommodated for the exhaustion, visual problems, and cognitive problems.  Or maybe no longer able to work a full day at all.  We need to advocate for everyone.

    • Anonymous
      Anonymous
      Jan. 07, 2010

      I do agree they now have 2 employees with MS my friend at work was confirmed 1 year ago she now is only able to work 21 hours a week ... I try to support her and show her the information I pull from the internet .. But in the hot weather I know I have to back down on work cause the heat really doesnt do well with my symptoms It throws me in to flair ups ...

      RHMLucky777

      Read More

      I do agree they now have 2 employees with MS my friend at work was confirmed 1 year ago she now is only able to work 21 hours a week ... I try to support her and show her the information I pull from the internet .. But in the hot weather I know I have to back down on work cause the heat really doesnt do well with my symptoms It throws me in to flair ups  Witch I have had several in 2009 so Iam just waiting to have to quit work due to the fact I  was falling due to my balance and in the hospitol for  aweek and home for another week Iam just waiting . I know my time will come just dont know when

    • hmking4
      Jan. 07, 2010

      Thanks!

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      A wedding next month, how exciting!  Thank you, Lisa, for sharing how you've learning coping and management skills in dealing with the effects of this illness.  One thing I think that might be most important for all of us is learning how to be flexible and adapting to situations which change frequently. 

       

      You have found a great way to deal...

      RHMLucky777

      Read More

      A wedding next month, how exciting!  Thank you, Lisa, for sharing how you've learning coping and management skills in dealing with the effects of this illness.  One thing I think that might be most important for all of us is learning how to be flexible and adapting to situations which change frequently. 

       

      You have found a great way to deal with memory loss and skill be able to stay employed in a job you really like.  That's wonderful.  And to have a loving family which is there for you and supports you - I need to hear that type of stuff speaking only for myself.  Beyond my mother, my family doesn't understand my challenges nor do they seem to want to learn. 

       

      Simply thank you for sharing.  We MSers have a wide variety of experiences under a wide variety of circumstances.  All have room to be represented!!

  • Anonymous
    Anonymous
    Jan. 07, 2010

    While I understand the spirit behind setting the record straight where Multiple Sclerosis is concerned, I feel I may scream when I read another passage about MS patients leading "fullfilling, active lives".

     

    Are we progressibe MS'ers as marginalized as I think we are?  So little seems to be written about us. I rely on my wheelchair, I am bedridden,...

    RHMLucky777

    Read More

    While I understand the spirit behind setting the record straight where Multiple Sclerosis is concerned, I feel I may scream when I read another passage about MS patients leading "fullfilling, active lives".

     

    Are we progressibe MS'ers as marginalized as I think we are?  So little seems to be written about us. I rely on my wheelchair, I am bedridden, I have difficulties with speech and swallowing, I have Sogren's Syndrome, skin problems, a dodgy digestive system, an aphasic brain that knows what it wants to say but simply can't manage.

     

    It appears Atherosclerosis may be developing (golly I hope not). I am a patient at my local pain clinic. I am obliged to take narcotics or I am consumed by fiery pain which claims my whole body.

     

    I've lost all autonomy (lost my husband too; he couldn't cope). I am learning to be grateful for the help I receive from others.

     

    Ugh, I sound like a miserable person reciting my litany of woes. That wasn't my intention, well, not entirely. I am fifty years old, my aunt died of MS complications when she was 52. It's kind of creepy.

     

    I've been ill for sixteen years and I've read countless articles about MS patients who climb mountains, run half a mile before work in the morning, and are surrounded by loving family members.

     

    I've yet to read a story about a woman like me. I live alone. I cope with pain and strange symptoms on a daily basis. My family lives in denial and it seems to be the safest place for us.

     

    I am not a sourpuss (despite evidence to the contrary), I am a positive person. I laugh a great deal, I enjoy visits from friends, and there's actually quite a few things one can do in bed; I enjoy decoupage and collage, drawing, music, film, most of all I enjoy conversation.

     

    However, I did draw the short straw with my illness, and I'd like those of us who are undergoing this incredible alteration to be more visible.

     

    Is it sour grapes? Gosh, I hope not. I want people to be happy.

     

    I just don't want to be invisible.

     

    Dee Findlay-Stewart

     

     

    • Anonymous
      Rachael
      Jan. 07, 2010

      Thank you for saying something!  I feel the exact same way!  After my MS  caused what is so far an uncontrollable seizure disorder, I've had to restructure my entire life as well.  It's like if you ARE in a wheelchair with MS or you ARE one of those people for whom MS has totally wrecked your life, even if you're keeping a positive outlook,...

      RHMLucky777

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      Thank you for saying something!  I feel the exact same way!  After my MS  caused what is so far an uncontrollable seizure disorder, I've had to restructure my entire life as well.  It's like if you ARE in a wheelchair with MS or you ARE one of those people for whom MS has totally wrecked your life, even if you're keeping a positive outlook, no one wants to admit you're around.  Because everyone has to be the happy cripple all the time.  Or we have to put on a farce for the world in the hopes they'll accept us and still want us around because they'd rather ignore us than face the fact that they could just as easily end up in our conditions.

       

      They ignore us because we scare them.  They don't want to end up where we are.

    • hmking4
      Jan. 07, 2010

      Thanks for posting.  Please tell us what would make your life better.  We need to advocate for everyone.  We need to get funding not just for new medications, not just for research but for helping people who have MS survive!

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      Wonderful question.  Yes, we NEED to know what would truly help to make life more livable and enjoyable at ALL stages of this illness or disability.  That's the type of information and advocacy which I have to admit I don't see as much of.

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      Rae,

       

      Thank you.  Those reading here should go check out your blog - In It For the Parking.  I hope that you do eventually find a seizure drug which works and doesn't cause all sorts of negative side-effects (like suicidal thoughts).  You are an inspiration to me with everything you have been going through and all that you are continuing...

      RHMLucky777

      Read More

      Rae,

       

      Thank you.  Those reading here should go check out your blog - In It For the Parking.  I hope that you do eventually find a seizure drug which works and doesn't cause all sorts of negative side-effects (like suicidal thoughts).  You are an inspiration to me with everything you have been going through and all that you are continuing to focus on.  You are definitely not invisible, at least in my eyes.

    • Anonymous
      Rae
      Jan. 07, 2010

      Lisa, you are so sweet!  I wasn't intending to promote my blog or anything.  You do so much for the MS community, and really, I think this was an excellent post that you made.

       

      I just really feel for Dee.  It's awfully hard to find posts that speak to progressive MSers.  It's not just the cheery thing, I think.  It's not just...

      RHMLucky777

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      Lisa, you are so sweet!  I wasn't intending to promote my blog or anything.  You do so much for the MS community, and really, I think this was an excellent post that you made.

       

      I just really feel for Dee.  It's awfully hard to find posts that speak to progressive MSers.  It's not just the cheery thing, I think.  It's not just that people are scared - I think I was crabby this morning. 

       

      A lot of the times, I think that everyone's looking to inspire everyone else.  No one wants to be a downer.  And so we DO all go "super optimist."

       

      GAH, if I weren't so busy preparing for the bar exam I would write more, but there I go... climbing my Everest again. ;)

    • hmking4
      Jan. 07, 2010

      Thanks for your post.  I've also met MSers suffering like you and the other poster who had constant pain.  I wonder if people with disabilities including MS or serious illnesses like cancer are expected to be brave, pleasant, upbeat fighters.   It must be hard to be the least bit upbeat when you are in constant pain.  Wonder if there is...

      RHMLucky777

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      Thanks for your post.  I've also met MSers suffering like you and the other poster who had constant pain.  I wonder if people with disabilities including MS or serious illnesses like cancer are expected to be brave, pleasant, upbeat fighters.   It must be hard to be the least bit upbeat when you are in constant pain.  Wonder if there is a way to address the expectation that MSers be brave, courageous, upbeat patients with a sense of humor at least among health professionals.  Also, I hope to interest my MS support group to form some kind of call and visit to those who cannot get out of the house or who have ended up in a nursing home.  "Company" and conversation is so important to those of us who have been forced to retire on disability.  Thanks again for reminding us that not everyone with MS is able to climb Mt Everest!

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      It's kinda ironic.  The myth which I had included but then left out dealt with the false perception of folks with MS (or any illness/disability) being brave and upbeat all of the time.  I eliminated it because I thought that it was ludicrous!!  Perhaps I should have included it because it's ludicrous.

       

      I really like your focus - what do...

      RHMLucky777

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      It's kinda ironic.  The myth which I had included but then left out dealt with the false perception of folks with MS (or any illness/disability) being brave and upbeat all of the time.  I eliminated it because I thought that it was ludicrous!!  Perhaps I should have included it because it's ludicrous.

       

      I really like your focus - what do we need to do?  what services would be most meaningful and helpful to you? - that sort of stuff.  My next planned post is on MS orgs which provide support services.  This would be a good time to bring up the question of what support people want and need.  Thank you for your active listening and questioning skills!

    • Anonymous
      lisa
      Jan. 07, 2010

      I agree my husband couldnt cope and I  was alone after being pushed aside for a year  >> I divorced him due to the growing apart and if I was going to go theough this  I would rather do it alone .. I  do need some one tearing me down ... I feel bad enough with the issues of memory , balance and fatigue  I still have a 15 year...

      RHMLucky777

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      I agree my husband couldnt cope and I  was alone after being pushed aside for a year  >> I divorced him due to the growing apart and if I was going to go theough this  I would rather do it alone .. I  do need some one tearing me down ... I feel bad enough with the issues of memory , balance and fatigue  I still have a 15 year old I need to make sure  she understands that it is because i was shut out for a year or mor due to him shutting down and it has nothing to do with her  but it is hard to open up and trust again  due to my hang ups  It has to be me and the MS if  my friends can accept that than okay ... Some dont want me at their house because they are afraid of me fallingand suing them.. That would never happen but I can accept that some people just dont want to be around me.. I am 51 also was diagonosed in 2006 so my life has been turned up side down .. But now Iam learning about a new me  The one with MS we go hand in hand 

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      Hi Lisa,

       

      So sorry to hear that your life has been turned upside-down.  In a way it is wonderful that you have a daughter to focus on.  Make sure that she knows that you love her unconditionally and that she is the light of your life which has absolutely nothing to do with your former husband or the divorce.

       

      It's sad to hear that your...

      RHMLucky777

      Read More

      Hi Lisa,

       

      So sorry to hear that your life has been turned upside-down.  In a way it is wonderful that you have a daughter to focus on.  Make sure that she knows that you love her unconditionally and that she is the light of your life which has absolutely nothing to do with your former husband or the divorce.

       

      It's sad to hear that your friends may be worried about you falling in their homes.  Do you use a cane to help with balance? or any other mobility aid?  Perhaps they are really afraid of facing the uncertainties of life which are made visible by your MS.  It's the fear which paralyzes us and our friends and loved ones, too.

       

      I just wanted to thank you for contributing to the discussion.  It's nice to meet you.

    • Anonymous
      lisa
      Jan. 07, 2010

      Thank you so much for giving me the chance to be able to express my thoughts to someone who   unerstands..When  I was released from the hospitol it was with the understanding that my doctor need the assurance my X husband would be in the picture in case i did need help if I have fallen... I live next door in my pops house because he moved into...

      RHMLucky777

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      Thank you so much for giving me the chance to be able to express my thoughts to someone who   unerstands..When  I was released from the hospitol it was with the understanding that my doctor need the assurance my X husband would be in the picture in case i did need help if I have fallen... I live next door in my pops house because he moved into a nursing  home right before I was  100% sure  I had Ms my. Nana has  althemiers .. So I am blessed with being close to my daughter  and my x husband is now suportive  He finds me  atractive now but hated me before .. It is truley amazing what divorce can do .. But at least my 15 year old knows I am in the picture so he can not take his atitude out on her ... Iam so proud of her she is in ROTC and my 24 year old is getting married in Feb 2010 Iam excited and am going to make sure I get plenty of rest so I ll be able to function hope fully my balance will be better I pray for that cause I know its hard for her to see how the MS has affected me.. I was so strong and independant until 2009 it has really taken a hold of me but  I am going to fight  with proper diet and prayer and exercise ... I have lost weight so that is a step in the right direction.... Thank you for listening my x has me so afraid to talk to anyone because he says my thinking is messed up and people will take advantage of me... I find that not true because in my work  I have met more customers with MS and They  find comfort in my story because  I share my posetive attitude with them They are happy I have been able to function and work.. I feel God has helped me be more understanding and I have no problem in telling people my story because It has opened my eyes to a new (ME  one that MS is a part of )  thankyou somuch Lisa

    • Lena
      Jan. 07, 2010

      Dont worry so much because people are more ignorant and hurtful than they think when it comes to dealing with us MSers, if they don't understand and of course don't listen to us.  In one ear out the other.  You are not a sour puss, you are just frustrated like I am at times having to justify yourself to others all the time.  Right now my...

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      Dont worry so much because people are more ignorant and hurtful than they think when it comes to dealing with us MSers, if they don't understand and of course don't listen to us.  In one ear out the other.  You are not a sour puss, you are just frustrated like I am at times having to justify yourself to others all the time.  Right now my problem is with family, who live away from me, lucky that my husband is strong, and the bloody ignorant GP that I have at the moment drives me crazy.  All I can say is thank god I am seeing my Specialist next month for my yearly so I can relax.  It is so nice to go to someone that you have a statement to make on a subject in regards to this disease and he mostly goes,"uh huh, uh huh ..." .  Therefore I know I am not frigging crazy just pissed at times because people do not listen and figure they know it all but we all know that they don't.  You know, in one ear out the other".

       

      I am a 42 year old woman who was diagnosed in 1995 and then was diagnosed with cancer in 1997.  I tell you I have been through alot since I was 30 and still dealing with the after effects of the surgery in which does not play well with MS in the neck up area.  The type of cancer I had was growing in the ear so they pretty much did a number on me. I look like I had a stroke, slanted, but they had to get it out, then the radiation I needed did a number with my MS also.  They hit my lesions with the radiation treatment.  I felt ok at the time I was getting it done but some few months later I was a mess.  You talk about MS symptoms, I couldn't walk, talk, see (doule vision) and I needed 24 hour care for a few months till I can handle myself alone during the day while everyone else was at work.  I am great now, being on Avonext since 2000, eating very good, and excersizing around 4-5 days a week.  The floor exercising a me love each other.  Still can work though, jsut being a house wife with this disease is more than enough.

       

      But it is true what they say that you can live with MS comfortably with you controlling it to a point is not consuming you.  I always remember what I went through the hard tim, all the specialists had told me the word "RARE" but all I kept thinking about at the time is if I hear that word one more time I'm going to scream but they thought I should have been dead and they wrote me up in a Medical Journal or Magazine so I guess I am RARE.

       

      Anyway, I'm clicking on forward and so can you.  Just believe in yourself and do what you believe is correct and have a strong feeling to people and what doctors say, not what they think you should believe.  I am still figuring out how to respond to that one without blowing a gasket because I have to admit I do and have plus I really taper away from people who come across so FAKY that they really gross me out.  They can feel guilty by themselves with their fakiness.

       

      Well I hope this helped some that you are not alone in your life experieces with this lovely disease.

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      Lena,

       

      Thank you so much for your comment and words of encouragement here, to Dee specifically but also to all of us who deal with these emotions and experiences on this journey.  I find comfort in your words here too and needed to read that it's okay.  Press the "forward button" - that's great!!

       

      (p.s. the reference to FAKY people - I...

      RHMLucky777

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      Lena,

       

      Thank you so much for your comment and words of encouragement here, to Dee specifically but also to all of us who deal with these emotions and experiences on this journey.  I find comfort in your words here too and needed to read that it's okay.  Press the "forward button" - that's great!!

       

      (p.s. the reference to FAKY people - I so totally agree with that too!!)

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      Dee,

       

      THANK YOU!!  My intent really was not to marginalize anybody by any means.  I know many MSers who do not lead conventional lives, but do lead fulfilling lives.  Now I suppose one would need to define what "fulfilling" means.  There are so many MS bloggers who are PPMS or SPMS and speak such truth about their lives, including...

      RHMLucky777

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      Dee,

       

      THANK YOU!!  My intent really was not to marginalize anybody by any means.  I know many MSers who do not lead conventional lives, but do lead fulfilling lives.  Now I suppose one would need to define what "fulfilling" means.  There are so many MS bloggers who are PPMS or SPMS and speak such truth about their lives, including the bad and the good.  Perhaps I tend to look beyond the chair or bed (or unemployment) and see the spark of the soul which lies beyond the outward appearance. 

       

      Vicki is one such writer who I see (through her words) leads a fulfilling life.  Michael is one and so is my friend Diane who has moved into a retirement home at the age of 52.  For gut honesty and deep inspiration, I turn to my friend Herrad who spent 15 months in bed for a 9cm deep pressure wound to heal.  Even after finally getting her chair support customized to support her and learning how to sit again, she just discovered that the wound has opened back up after being completely closed for 3 months.

       

      To be completely honest, I've been depressed lately and perhaps in an attempt to make myself feel better I tended to the upbeat side a bit too much.  My way of coping perhaps as I find myself without a spouse, no children, aged 41, no fulltime job (but 3-days of teaching each week and lots of little writing), unable to walk 3 blocks without feeling as though my legs will simply collapse under me, and having a cold which has caused more of my symptoms to emerge than normal.  Enough about me, tho.

       

      I started writing about Sjogren's Syndrome for the RA site here.  Only one has gone up so far.  From what I've learned, Sjogren's is really a nasty disease which causes so very many problems and lots of pain.  I'd be interested in learning what you do for it.

       

       

    • Maris B. Mohr
      Jan. 09, 2010

      Lisa,

      I think you've done it again! In addition to the never-ending pain Yell, dry eyes, dry mouth that I've blamed on my various meds, I've had this inexplicable rash since the middle of May, meaning +/- 7 months already. The dermatologist took a biopsy and came up with minor skin inflamation. My gp suggested I do an experiment and stop wearing silver jewelry;...

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      Lisa,

      I think you've done it again! In addition to the never-ending pain Yell, dry eyes, dry mouth that I've blamed on my various meds, I've had this inexplicable rash since the middle of May, meaning +/- 7 months already. The dermatologist took a biopsy and came up with minor skin inflamation. My gp suggested I do an experiment and stop wearing silver jewelry; NO CHANGE. I stopped taking the Vit D3 that was actually helping some with the pain and fatigue; NO CHANGE. I changed shower soaps, body lotions, stopped using parfumes, changed shampoo; NO CHANGE.

       

      So now you bring up this Sjorgen's Syndrome with all of it's possible sx. You're BRILLIANT Kiss! I doubt that any of my drs have ever heard of this, but I will suggest it to my neuro on Jan 20 when I see him and to my gp the day after that.

       

      What I infer from reading your blog in RA and SS is that there's not really anything that can be done about the rash. Please correct me if I'm mistaken.

       

      What would we do without you?!?!?!?

    • Lisa Emrich
      Health Guide
      Jan. 09, 2010

      Maris,

       

      Oh wow, I'm so sorry to hear that you've been in such horrible pain lately.  That stinks!!

       

      Interesting observation on Sjogren's Syndrome which has the landmark symptom of dryness, but which I learned through others is truly painful as well.  The diagnosis can be a bit involved (bloodwork, measuring tears and saliva, etc) but it...

      RHMLucky777

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      Maris,

       

      Oh wow, I'm so sorry to hear that you've been in such horrible pain lately.  That stinks!!

       

      Interesting observation on Sjogren's Syndrome which has the landmark symptom of dryness, but which I learned through others is truly painful as well.  The diagnosis can be a bit involved (bloodwork, measuring tears and saliva, etc) but it seems that treatment does help. 

       

      I'm not sure about the rash specifically, but typical treatments for vasculitis include immunosuppressants (such as methotrexate, cytoxan, or prednisone) which can also be useful for MS (so I'm told). These drugs are different than the immuno-modulators we normally use in MS.

       

      The links I put at the end of the RA/SS post go to some very useful websites.  I need to write specific about diagnosis and treatment next as this first post had barely touched on the subject.  But checks the links to read much more about Sjogren's.

       

      I hope you haven't developed Sjogren's, but if you have, I hope that treatment works really well for you!!

    • Maris B. Mohr
      Jan. 11, 2010

      Lisa,

      Thank you for this added info. All I need now is another name for my pain - lol Surprised! As far as the rash, it's happy where it is around my shoulders, neck, chest. It doesn't bother me much, but it's very nasty looking.

       

      As far as dryness, I've been suffering with dry eyes for years (my ophthamologist got me started on HYLO-Comode drops about a year...

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      Lisa,

      Thank you for this added info. All I need now is another name for my pain - lol Surprised! As far as the rash, it's happy where it is around my shoulders, neck, chest. It doesn't bother me much, but it's very nasty looking.

       

      As far as dryness, I've been suffering with dry eyes for years (my ophthamologist got me started on HYLO-Comode drops about a year and a half ago), dry mouth that drives me to drink - ha-ha, frequent nosebleeds apparently from dryness. As far as what I checked yesterday and what you said about SS, these sx appear there as well. What I'm not willing to do is to take steroids of any kind to take care of these things. I had enough of that when I was dx and went through the 4 days of drip Solumderol and 6 weeks of Prednisone. NEVER AGAIN!

       

      Thanks for all of your work and info. I really don't have the energy anymore to so all of that research.

       

      Wishes for pain-free, happy days,

      Maris

    • Maris B. Mohr
      Jan. 09, 2010

      Just a P.S. This came up exactly when I'm in one of the most hellish pain-weeks I've had in a very long time. Now I feel less out of control.

       

      Perfect timing. THanks.

    • just2tired
      Jan. 07, 2010

      Dee, I know exactly how you feel.  It does seem the RRMSers get all the publicity, doesn't it?  And although my neurologist says I still have rrms, my primary care doc and I know I moved into Secondary Progressive a long time ago.  Yes, I too am in a great deal of pain, I take Percocet and Morphine 4 times a day and it hardly makes a dent. ...

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      Dee, I know exactly how you feel.  It does seem the RRMSers get all the publicity, doesn't it?  And although my neurologist says I still have rrms, my primary care doc and I know I moved into Secondary Progressive a long time ago.  Yes, I too am in a great deal of pain, I take Percocet and Morphine 4 times a day and it hardly makes a dent.  And the Flexeril does not even touch the spasicity issue anymore.  You may have seen my previous post about all the other syndromes and conditions I have gathered as well as MS, Fibromyalgia and Osteoporosis being the most serious I think.  Honey, I am so thankful you have friends that visit.  After I had to retire disabled, all my 'friends' pretty well deserted me.  I was actually shocked to get a Xmas card from one of them this year!  You are on the right track though, keeping your mind busy and your hands busy as much as you possibly can.  I also color, yes it is true.  I have two baskets full of markers and a good collection now of coloring books that are mandalas, geometric designs, that sort of thing.  It is really a meditation of sorts, because colors have healing powers in their vibration and coloring seems to address the issues I am dealing with at that particular time.  I never have colored the same picture twice the same.  Also if you do not already do it, play games on the computer.  The MS Society has a games page now but I like the games on Big Fish Games and Pogo.com.  It really helps to keep your brain working and sharp as possible.  There are word games, cards, hidden object. all sorts of games out there!  And almost all of them have chat too, and you can meet some really nice people.  My only contact with the outside world besides the doc are the forums and chats.  Otherwise it is me and my cats, 24/7, and my husband.  I am so sorry to hear your husband left, I do not know what I would do without my Tom.  Gosh, I am starting to ramble, but I wanted you to know that you are not alone.  There are a lot of us out here, you just don't hear about us very much!

      Love and Light,

      Jan

    • Anonymous
      Jo
      Jan. 08, 2010

      Amen.I just wanted to say it is rough living on your own,and I am blessed with a husband who does almost everything about running a home and doing household chores as well as take care of me.I meant by saying that friends dont invite us into their world.Not necessarily to go shopping because I really never liked it all that much either.Its the concept of your...

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      Amen.I just wanted to say it is rough living on your own,and I am blessed with a husband who does almost everything about running a home and doing household chores as well as take care of me.I meant by saying that friends dont invite us into their world.Not necessarily to go shopping because I really never liked it all that much either.Its the concept of your dearest life long friends and children who simply lable you a drug addict.Not because you take medications with a reliable pn mang group that you have a narcotic contract with.My children,well atleast one of them never see my sunptoms as a disease they see someone who stumbles or has panic attacks because she is a drug addict.And don't understand how many times you explain it that those are the symptoms of our disease.I have seen a psychiatrist I worked with at Mayo for 19 years we have been friends and I am his patient also.And he says give it up she will never accept it so quit trying.How do you quit hope.How do you quit love.How do you settle for injustice.

  • Maris B. Mohr
    Jan. 06, 2010

    Lisa,

    Thanks for including PAIN as a real sx of MS. It's one of my worst and nothing helps relieve it all the way.

     

    Wishes for PAIN-FREE hours and days,

    Maris

  • just2tired
    Jan. 05, 2010

    A really great article Lisa!  It covers topics that we MSers are asked about but sometimes have difficulty answering.  There  was some speculation that the MS caused my Fibromyalgia and vice versa, but the truth of it is not so easy, huh?  Since being diagnosed with MS, I have also been diagnosed with 6 other painful and irritating conditions/syndromes/diseases...

    RHMLucky777

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    A really great article Lisa!  It covers topics that we MSers are asked about but sometimes have difficulty answering.  There  was some speculation that the MS caused my Fibromyalgia and vice versa, but the truth of it is not so easy, huh?  Since being diagnosed with MS, I have also been diagnosed with 6 other painful and irritating conditions/syndromes/diseases and it can be difficult to tell which is rearing its ugly head at times.  The research being done is so complicated, it is hard to read much less understand!  Ultimately, what we MSers need is people that can be patient and understanding with us and a doctor or doctors who really care and listen to what WE have to say.  I am going to forward this article immediately to my family-I like to keep them well informed about MS so they can better understand why I am sometimes like a person with multiple personalities!  Thanks for a really good article!

    Blessing to ALL,

    Jan

    • Theresa B.
      Jan. 07, 2010

      Lisa, I to am one that has several diferent diseases. In 1990 first was Ebstein Barr, chronic fatigue, they took out my gallbladder thinking that was causing my low grade fevers, fatugue,(dibiliating), and not being able to eat. So I do not have my gallbladder, because I had went to 6 doctors and they could not figure out what was wrong wth me. Finally...

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      Lisa, I to am one that has several diferent diseases. In 1990 first was Ebstein Barr, chronic fatigue, they took out my gallbladder thinking that was causing my low grade fevers, fatugue,(dibiliating), and not being able to eat. So I do not have my gallbladder, because I had went to 6 doctors and they could not figure out what was wrong wth me. Finally a Natural Path asked, did they ever take blood test for virues? He was the one who found out about the Ebstein Barr. Then 6 years later they diagnosed me with M/S. Mine was very bad in the spine, Transverse Mylitus, then the M/S. Now later I started having so much pain in 2005, started in the hip, thinking it was my back, since I always had disc issues. So in 2007 I had a discectomy. Well that did not work. In 2006 they said at Mayo Clicic that I had Myo Faucia(spelling?) which basically is but worse Fibrmyalgia. My friends could never understand how one person could have so much. Now my pain has been so bad that I am hardly walking. Doctors do not know if it is from my back or the M/S. The pain will start when I walk, sit, stand. It feels like pressure pain. I have burning in my thoracic, lumbar, feet and ankles. Numbness in legs and feet ankles, lumbar area, can't touch my low back never goes away. All the time. When I lay down then the burning will subside. My muscles in the legs, hips, anlkes and feet are cold or hot, I feel as though I want to ripe them out. It is a naughing ache pain, buring, most all the time. Does any one you know have anything simular our there?. Doctors can not help me. I even went to John Hopkins, they blamed it on M/S. Everything was M/S. I think I have been labled M/S. I do a lot of Natural Pathic, for my health. I feel I have read and read so much about it all I am tired, of trying to find a solutution just to help the pain. Thank you, Theresa

    • Anonymous
      Jo
      Jan. 07, 2010

      This is for Theresa B,I worked at Mayo Clinic for 7 years,Do not think they care so much for people,They did in the very beginning and towards the end they used us dumb, stupid, cousin marrying bubba's, who lazily sat in the shade all day, southerners.Yep I said it.That was the view of most of the people who came down to Florida.They worked in Rochester so...

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      This is for Theresa B,I worked at Mayo Clinic for 7 years,Do not think they care so much for people,They did in the very beginning and towards the end they used us dumb, stupid, cousin marrying bubba's, who lazily sat in the shade all day, southerners.Yep I said it.That was the view of most of the people who came down to Florida.They worked in Rochester so long and wanted to retire down here and live the warm life.So they took the high paying jobs and treated us like crap.We being the ones who did all the hard work that disabled me for life.I wanted to let you know about a book that may answer some of your questions..It answered a multitude of mine.In fact there are 3 books written by the same 2 lady doctors.Who have Fibromyalgia and myofascial (sounds like myo- fasha) Pn Syndrome.As I started reading in the sidelines they would make funny inserts.Like what people say to us that makes us want to put healthy peoples heads through a walll.The Book is called Fibromyalgia and Myofascial Pn Syndrome a

       

       

       

       

       

       

       

       

       

       

       

      Survivors handbook.written by Dr.Devin Starlanyl and MaryEllen Copeland.The wrote the last one tells you how to go through legal process if you are too disabled to work and how to advocate for your self.I found myself laughing more at what we really go through in a day.They describe so accurately what we endure it is uncanny.I used to read atleast a book a week.Now I cannot read anything I have to hold.But if you can hold a book I suggest you get this one.They have some first editions on ebay for a few dollars.How most of our friends stop asking us to go shopping with them because they have to hurry and we cannot hurry it tears our muscles.Why is that so hard to understand.Why is it that society has labled us all drug seekers.As if we could get high.That's a laugh,That is like giving a woman in labor a little laughing gas and then say there now there won't be any more pain.Bull...all it does it take the edge of for me.I wish I could get out of this body.Some days I think about suicide so much I have stopped telling others that on the advise of a friend.And she is right.Some day my kids just might baker act me and then where would I be. Without my meds I cannot function,I hope this is of some help.But if it does not.This does.I do understand what your life is like.I do understand.I do not hold you responsable for it and don't you let any doctor or friend or foe tell you otherwise.We did not pick to live in chronic pain.So stand up for yourself if it is only to tell them off,A friend who understands

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      Jo,

       

      Thank you for suggesting these books and giving a personal account of your experience at the Mayo Clinic.  That really is sad to hear as Mayo has such a great reputation.

       

      Sounds like the description of a normal day in one of those books could fit for so many of us who living with various degrees of disability.  My friends don't really...

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      Jo,

       

      Thank you for suggesting these books and giving a personal account of your experience at the Mayo Clinic.  That really is sad to hear as Mayo has such a great reputation.

       

      Sounds like the description of a normal day in one of those books could fit for so many of us who living with various degrees of disability.  My friends don't really ask me to do things such as go out shopping, but then again they know that I HATE crowds and noise and have to stop to rest very frequently.  So maybe it works out just fine for us in the end that I don't go, at least it works out for me.  ;)

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      Theresa,

       

      Everything is blamed on MS - now that's an unfortunate truth for too many which I did not mention above.  True as in it happens to many, but false as in it shouldn't!!

       

      I'm sorry to hear that you are experiencing SO MUCH pain right now no matter what the specific cause of it is.  I don't have fibromyalgia or myofascial pain so...

      RHMLucky777

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      Theresa,

       

      Everything is blamed on MS - now that's an unfortunate truth for too many which I did not mention above.  True as in it happens to many, but false as in it shouldn't!!

       

      I'm sorry to hear that you are experiencing SO MUCH pain right now no matter what the specific cause of it is.  I don't have fibromyalgia or myofascial pain so I'm sorry that I can't directly relate.  But I can relate to have more than one disease which causes pain and discomfort, no knowing which is to blame for a particular rough spot.

       

      My friend Lene writes on the RA site but she also has fibromyalgia.  Perhaps she has written something which might help you.  She's wonderful with resources of information.

    • Lisa Emrich
      Health Guide
      Jan. 07, 2010

      Jan,

       

      Some how I missed that you were diagnosed with so many other illnesses/conditions/etc since developing MS.  The comorbity issue is a real pain in the rear, truly.  It is frustrating to see how little information is out there regarding the combinations of diseases.  I've been research RA and various other conditions and have found...

      RHMLucky777

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      Jan,

       

      Some how I missed that you were diagnosed with so many other illnesses/conditions/etc since developing MS.  The comorbity issue is a real pain in the rear, truly.  It is frustrating to see how little information is out there regarding the combinations of diseases.  I've been research RA and various other conditions and have found it difficult to find really good information.  I haven't even tried to tackle MS comorbidities but suspect that it might be even more lacking.

       

      Thanks so much for the words of confidence on the post.  I spent a long time trying to wheedle down the list to only 10 and to feature the broadest topics.  But if you happen to see the comments left down below, you will see that I missed a few very important items.  But thankfully, our community members are jumping in to set the record straight.  I love that!!