I am Cindy.  I am a woman, a mother, a wife, a sister, a daughter, a cousin, a friend.  I have Atypical Multiple Sclerosis-Chronic Progressive Atypical Multiple Sclerosis.  

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17 Responses to “About Cindy”

  1. Tiffany Says:

    Hi! Any chance you still check this blog? My story sounds very similar to yours. Was just told by my Dr today that atypical MS isn’t a thing and I wouldn’t find anything if I googled it. But I found you. Would love to email if you are up for it. tlnicholas at Gmail dot com
    Thanks!
    Tiffany

  2. William Says:

    Hi Cindy, I would like to contact you and discuss Rituxan and Progredsdive MS. If you could e-mail me at bill3901@gmail.com Id apprecite it.

  3. mary Says:

    Hi Cindy. I have had MS symptoms which if anything are progressing instead of improving aNY but am not any closer to a diagnosis. Are you available to chat more privately?

  4. Josephine Stimage Says:

    MS treatment is still not 100% successful. But with the advent of modern stem cells, i think in the near future we would be able to cure it permanently.**.;:

    Warm regards http://www.healthmedicinelab.com/blue-waffles-disease-pictures/

  5. Juli Says:

    I am practically crying reading this blog. I can relate to your struggle as I am going through it currently. I was dx with atypical ms last year and was put on copaxone. However, after I continued to get worse and my mris continued to be negative the doctor changed his mind and said no treatment was necessary. I am going to the mayo clinic in mn next week in hopes of some help and answers. I live in ca so it’s a big trip for me. I was hoping you might give me the name of your doctors so they can possibly help me if mayo can’t. I’m desperate! Please help!

  6. Rosanen Says:

    Hello Cindy, I just found your blog. Thank you for sharing your experiences! I just got Atypical MS diagnosis (after having Relapsing-Remitting Multiple Sclerosis diagnosis). My Neurologist spoke about CellCept – it might be the next medicine. Tysabri didn’t help me.

    Please excuse my poor English. English isn’t my first language.

  7. katie Says:

    Cindy, can you give me the information for your neurologist and ms specialist? I’m right @ 18 months of “MS Symptoms” and no diagnosis or help with my condition.

  8. atypicalms Says:

    Hi Dion,

    Your situation is very common whether someone you love is effected by MS or anther chronic illness. I have several posts about the anger I felt. As well as how I cope with that anger. I know what she is going through. It is like she went for a drive, hit a brick wall, and when she regained consciousness her entire life was different. Everything that defined who she was, is gone, different, changed. It takes some time to make this new life fit. I remember being in my car as I passed a woman out jogging while pushing a baby carriage and I would yell at her. I was jealous of my husband because his life seemed unchanged. He still worked, joked, moved around, did what he wanted to without even thinking about it. I yelled at him often for little things because it was only those little things I could control. My guess is she feels the same way. Sometimes counseling can help; help each one understand the other.

    I am not sure how long she has been diagnosed or how effected she is but for me the anger came from a complete life change that I didn’t want and could not fix. Counting my blessings, being thankful everything I did have helped me. Meditating, slowing down, enjoying trying new things like knitting helped. This adjustment period can make or break a relationship. There is an adjustment period because “normal life” is redefined for MS patients. A good day now is vastly different than a good day before MS.

    Reaching out to people, talking to people brings about understanding. With understanding all is possible. I wish her and you well. She can always leave a comment and I’d be happy to talk with her.

    All my best.

  9. Dion Tulloch Says:

    Cindy,

    My live in girlfriend has MS. Like you she used to be very active. She’s a former jump rope champion and used to go to the gym everyday. Now she’s forced to sit home everyday while I go off to work. I also work out often. She can be very volatile-she gets very angry at little things like putting a bill on the table in wrong direction or not keeping a closet completely clean. She’ll yell and scream and say that I’m fustrating her and her actions are justified. She says that it’s me and not the MS. I yell back and we get into constant arguments. I love her, but I don’t know what to do.

  10. biophysics_phd Says:

    Did you see in the news about the virus that may be linked to this condition?

    WSJ
    OCTOBER 8, 2009, 4:37 P.M. ET
    Retrovirus Linked to Chronic-Fatigue Syndrome

    By AMY DOCKSER MARCUS
    Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications.

    An estimated 17 million people world-wide suffer from chronic-fatigue syndrome, and the Centers for Disease Control and Prevention puts the U.S. figure at between one million and four million. CFS is characterized by debilitating fatigue and chronic pain, but there are no specific treatments, and the diagnosis is often made by ruling out other diseases. Thus there is disagreement in the medical community as to whether CFS is a distinct disease. A study showing a strong viral association with CFS could change that equation.

    But the significance of the finding, published Thursday in Science, extends far beyond the community of people living with CFS.

    Researchers are just as concerned about the finding that nearly 4% of healthy people used as controls in the study were also infected with the virus, called XMRV.

    NCI’s Dr. Le Grice said studies will be launched to determine whether XMRV is associated with other diseases. At the Whittemore Peterson Institute, Dr. Mikovits said they also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia.”

    I know at least one guy with MS who also has electrical hyper-sensitivity. He does much better when the AC magnetic field is below 20 microGauss, and when there are no microwaves (i.e. cell towers) anywhere near him.

  11. Bubbie Says:

    Hi Cindy,
    After 4 years of neuros and specialists and 4 hospital stays, I was dx’d with not atypical, but an MS Variant. Whatever the heck that means. I had plenty of lesions but CNS was negative for bands. I was on cellcept and various other drugs for symptoms and then the DMD’s for 3 years. I just kept getting worse.
    Then last year, on my insistence I was given a series of new bloodwork. My pain level was intolerable and I didn’t feel secure that it was all MS. Ah Ha! It wasn’t. And then came my new or my re- diagnosis : Sjogrens Syndrome CNS Vasculitis and mixed connective tissue disease. Did you say “HUH”? I did too. But after a few months of methatrexate I’m in a rare remission and feel great. Hope it lasts. 🙂

  12. Elaine Jones Says:

    Hi,
    I’m English – live near Wimbledon. I just want to say that I too was diagnosed with “atypical” MS almost 17 YEARS (YES, years!) after repeated visits to a crap GP because things were not right with me. Perhaps this was a record.

  13. Michael Tim Says:

    I love your site! 🙂

    _____________________
    Experiencing a slow PC recently? Fix it now!

  14. atypicalms Says:

    Hi Chrisitan,

    Thanks so much for your kind words. I, too, love the outdoors. Only in my case it was not photography, it was hiking in the woods with my dog which brought me a calm spirit, and a clear mind.
    I want to wish you well with the baclofen pump implant. May you hop over rocks and cross streams again. Please comment again and let us all know how you are doing.
    Cindy


  15. Hello Cindy

    I am so glad that I have found your web site and your wonderful blogs. They are so inspiring.
    As a chronic progressive MS’er myself for the past 5 years it’s been very frustrating for me to live with this condition,especially not beeing able to do things I love so much…that is outdoor photography.
    I did have to change and adapt to my disability which is that I am not able to walk,lift etc.
    In my case I brought the outdoors into my home and started to photograph(scan)in my house. I still miss beeing able to lug around my camera equipment,step, jump,climb, hop over rocks, cross streams,setting up my camera and waiting for the perfect shot.Well,I do have great memories of doing so(all those pictures on my walls).
    On another note, I will have the Baclofen pump implant procedure done this Friday and I am very excited.Thank’s to you and your positive outlook it was easy for me to decide and have this done.
    Cheers,
    Christian

  16. atypicalms Says:

    I hear the same story from so many people. I have only begun this journey in 2005 and even though I carry the diagnosis of Atypical MS, my neurologists continue to test for some pretty obscure, rare, unknown diseases.

    I don’t let the “why” get to me. Surrounded by friends and family, they carry me when I cannot carry myself. Not knowing what disease I have is less important to me than the people in my life. As long as I am being treated and the treatment is helpful, then I am content to continue working towards something definite.

    My docs keep saying that the technology has not caught up with me yet. I hope it not only catches to me, but to everyone in this “limbo land”. No one will confuse Disneyland with Limbo Land.

    I wish you and your husband well. Hopefully, you too have docs that continue to look, research, and treat the symptoms until something more definite comes along. One thing for certain I have learned a lot along the way. I have met so many people like you and I as well. I find a great deal solace communicating with people who really know and understand the reality of this disease.

  17. SANDY BETOR Says:

    MY HUSBAND WAS DIAGNOSED WOTH MS IN 1991. HIS SYMPTOMS STARTED IN THE LATE SEVENTIES. HE IS NOW 65 YEARS OLD, AND IN A WHEELCHAIR, AND LOSING MOBILITY IN HIS LEFT ARM AND HAND. THEY DID ANOTHER MRI OF THE HEAD AND SPINAL CORD…..NO LESIONS TO SPEAK OF. CERTAINLY NONE TO EXPLAIN HIS PHYSICAL CONDITION.THEY ARE NOW CALLING IT A-TYPICAL MS. THE RADIOLOGIST SAID “MS DIAGNOSIS UNLIKELY.” SO WE HAVE TO CHOOSE WHO WE WANT TO BELIEVE….VERY FRUSTRATING FOR MY HUSBAND AS YOU CAN IMAGINE. HE WANTS TO KNOW WHY HE IS IN A CHAIR, AND LOSING GROUND.

    SANDY BETOR
    NORFOLK, VA.


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