Tuesday, August 11, 2009

Great Webcast: Understanding Primary Progressive MS

Primary Progressive MS (PPMS) is an often poorly understood disease, even by those suffering from it. PPMS afflicts only about 10 to 15% of the MS population, and differs significantly from other forms of the disease. In visiting many of the Internet MS forums, I've found that it's quite common to see much confusion and misinformation about this form of the disease being passed from patient to patient, including such fallacies as "most people with PPMS are dead within five years of diagnosis", "PPMS inevitably leaves its victims bedbound vegetables", and "PPMS leads to the compulsion to drive wheelchairs crazy fast down crowded city streets". Okay, I made that last one up, but there really is a lot of confusion about PPMS. ppms2

The National Multiple Sclerosis Society has just released a series of three videos covering various aspects of PPMS, and I found them to be surprisingly honest and informative. Most importantly, the videos dispense with many of the old notions about the disease, and touch on some of the latest developments in the research and understanding of this very challenging form of MS. In my opinion, these videos are so useful that they should be viewed by anybody dealing with any form of MS, simply because they contain valuable information that crosses the boundaries of disease type.

The first video, "Understanding Primary Progressive MS", talks about the substantial differences between PPMS and the other forms of the disease (RRMS, and SPMS, and PRMS), and discusses some of the challenges involved with correctly diagnosing PPMS. This video features Dr. John Richert who is the Ex. VP, of Research & Clinical Programs at the NMSS, being interviewed by a woman who looks very much like somebody I dated about 14 years ago. I wonder whatever happened to Jill?

The second video, "Strategies, Research, and Hope for Primary Progressive MS", is to me the most valuable of the three videos. In it, Dr. Richert clearly makes the point that an "autoimmune" response is not the primary driver of the PPMS disease process, and thus none of the current crop of immunosuppressive or immuno modulating drugs are useful in treating it. He also states that this is also true for SPMS, and that there is more going on in the RRMS disease process than was previously thought, as well.

Hallelujah! I've been saying for years now that a misguided immune system is only a symptom of MS, and not the cause of the disease, and that focusing on suppressing or modulating the immune system is like treating a broken leg with painkillers. This disease damages far more than just the myelin coating of nerve cells, and it's great to know that research time and money is finally being spent on trying to comprehend the underlying cause of the disease, as well as searching for strategies to protect and repair damaged nerve tissue. This is a tremendous leap forward in the understanding of the Multiple Sclerosis disease process, and pertains not only to PPMS, but to all of the other forms of the disease as well. In my opinion, this video is must viewing for everyone afflicted with any form of MS.

The third video, "Moving Forward with PPMS", talks about the emotional and psychological impact of dealing with a progressive degenerative illness. It features Rosalind Kalb, PhD who is the Director of the Professional Resource Center at the NMSS, being interviewed by a very somber man who looks like somebody just defecated in his lap. Cheer up, dude, things can't be that bad...

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  1. DXed with PPMS 7 years now, suspect beginning began in "&4 to ne noticeable thou I thought Benign Positional Vertoigo. I'm not dead yet, in a chair but little pain and Cog Fog - wqe are all so different. Don't get hung up on labels. Like yoiou Marc, believe MS affects Immune Systems but that is not cause.

  2. Jeez, PPMS has made me a terrible typer and proof-reader - 94 it began WE are all so different.

  3. I think that anyone diagnosed with PPMS should watch the videos, especially before coughing up the dough for those expensive drugs that will not help much.

  4. Thank you very much for your blog. Was recently diagnosed, 1 month ago, with PPMS, although will find out on Tuesday if it is acutally Devic's diease - even worse. Just watched the three videos and your commnets lifted my spirits. I had to LOL about the defecation joke, it does seem true. Am still laughing. Well, it sucks, but thank you for the blog. Wonder what did happen to Jill, maybe you will run into her some day in NYC, maybe not. Debbie in Cleveland, OH

  5. I have a friend that suffer of this disease, she never put attentio to the symptoms and when the doctor foud the problem was too late, for disgrace the treatment is useless now because she is in the last disease stage.

  6. I am one of the lucky people who has PPMS. I've never asked God why I was chosen, but I am thankful that I am still able to walk with my trusty wheeled walker. My feet are numb and tingly, and I feel like a four year old trying to put my shoes on. My right leg doesn't like to admit that it is attached to my body, and doesn't always obey my wishes. The older that I get (55yrs young), the slower my body moves. As long as I keep moving forward, and don't stop, I will be happy.

  7. I've just discovered this blog and thank you very much for your posts! It is the first comprehensive source of information about PPMS I've found so far! My friend was diagnosed with PPMS 3 years ago after the MRI was done.At that time, she had some balance problems and problems with the use of her arm. Currently, 3 years later she is in hospice care and basically she is just getting strong pain killers and muscle relaxants. I don't quite understand how it could happened that way! Most articles about MS sound very positive! But now it looks like PPMS is a very special story! I really hope that some new ways of its treatment will be found soon!! Thank you!