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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June 29, 2008 at 5:06 pm
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.
June 29, 2008 at 11:52 pm
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.
September 23, 2008 at 4:47 pm
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
September 24, 2008 at 10:12 am
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
February 28, 2009 at 2:07 pm
I love your site!
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April 25, 2009 at 9:10 am
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.
August 18, 2009 at 1:15 pm
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.
October 11, 2009 at 1:08 pm
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.
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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.