We’ve shared a lot about drug treatments and therapies for Multiple Sclerosis in these pages over the past few years. New therapies have come on the market for MS symptoms from walking and weakness to spasticity and neuropathy. What I’d like to talk about today is “the other” kind of therapy.
At last night’s “Poker Night” — my men with MS self-help group — we had a wonderful guest speaker talking about emotional/psychotherapy. We asked her to specifically talk what might be called ‘warning signs’ that it might be time to talk to a professional about the emotional issues which surround MS.
There are so many different types of therapy and they all have their merits for different people.
We talked about depression and anxiety issues, about family coping, about spousal relationships and communications… we went over our allotted time!
The disease of the brain had previously been seen mostly in people with severely compromised immune systems (as in the case of AIDS or drug induced immunosuppressence for organ transplants) and was almost always fatal. The same was true for many of the first PML patients in the Multiple Sclerosis community.
While new treatments - including plasmapheresis - have reduced the mortality rates of PML they have not eliminated the risk nor can they repair damage done by the insidious infection.
I suppose that it says a lot about our disease (as well as our society) when the vast amount of reporting on multiple sclerosis drug therapy is done in the financial papers and investment pages…
The 24/7 news cycle is no longer just reserved for word of wars, terrorist attacks, and what celeb did what with whom in the wee hours on a Pacific atoll. Most of North America woke to — or in the case of a couple pharmaceutical CEOs, were awakened by — news that the European cousin to our Food and Drug Administration’s (FDA) drug approval wing, the Committee for Medicinal Products for Human Use (CHMP) had laid waste to two balance sheets while cementing another as the owner of the only MS pill OK’d for use in the Euro zone.
For drug giant Merck, it’s been a rough autumn which has become a harsh winter.
Plasmapheresis (from the Greek for “taking away something molded”) is a process by which the blood is removed, filtered, and replaced over a period of one to a few hours. In the past half century, plasmapheresis has evolved in its technology but is still based upon the same theory with which it began as a late 19th century dairy separator.
In the 1950s, with the advent of more advanced machinery, medical researchers began to look at how “cleaning” the blood might affect disease function. By the 1970s plasmapheresis had become one of the few treatments for muscular dystrophy (MD).
This weekend, the American Academy of Neurology posted its recommendations that plasmapheresis be added to our arsenal as a “secondary treatment for severe flares in relapsing forms of MS…” It is important to note that this is for relapsing/remitting (RRMS) forms of the disease as it did not prove effective for progressive (secondary, primary or “chronic”) derivations of multiple sclerosis.
Balance problems? Fatigue? Weakness? These symptoms probably sound all too familiar to anyone living with multiple sclerosis (MS), as these are just a couple of the many MS symptoms that we live with. However, they are also some of the symptoms of PML - progressive multifocal leukoencephalopathy - the dangerous brain infection that is associated with use of Tysabri...
[reekers11a]Reekers JA, Lee MJ, Belli AM, and Barkhof F: Cardiovascular and interventional radiological society of europe commentary on the treatment of chronic cerebrospinal venous insufficiency.Cardiovasc Intervent Radiol. 2011 Feb;34(1):1-2. Epub 2010 Dec 7.PMID 21136256, doi:10.1007/s00270-010-0050-5.
Department of Radiology, AMC, University of Amsterdam, Amsterdam, The Netherlands.
Department of Surgery, University of Chicago, Illinois, USA.
[vedantham10a]Vedantham S, Benenati JF, Kundu S, Black CM, Murphy KJ, Cardella JF,: Interventional endovascular management of chronic cerebrospinal venous insufficiency in patients with multiple sclerosis: a position statement by the Society of Interventional Radiology, endorsed by the Canadian Interventional Radiology Association.J Vasc Interv Radiol. 2010 Sep;21(9):1335-7.PMID 20800776, doi:10.1016/j.jvir.2010.07.004. PDF.
Mallinckrodt Institute of Radiology, 510 S. Kingshighway Blvd., Box 8131, St. Louis, MO 63110-1076, USA.
Well, it's time for another edition of Bits and Pieces, my semi regular compilation of various items, mostly related to MS, which have recently caught my attention. First though, a quick note about some housekeeping I was forced to do here on Wheelchair Kamikaze.
“It is not bigotry to be certain we are right; but it is bigotry to be unable to imagine how we might possibly have gone wrong.” - G. K. Chesterton
People are loyal, often to a fault. Year after year we stick with the same auto insurance company, the same favorite restaurant, and even the same brand of shampoo, no matter how much better the alternatives may be. I’ve used one bank for more than 20 years. Is there no better choice? I’m not sure. I’ve never considered the issue. Whether it's a matter of comfort, loyalty, or laziness, we tend to mindlessly stick with what we know.
Much of 2010 was spent living , thinking, dreaming, sharing and worrying about MS and CCSVI. I suspect 2011 will find me living along those lines. I also have to admit that too much time was spent in conflict with others who do not share my views and opinions. While most of us have this one thing in common, it may be the only common denominator for some. I intend to remain an advocate. I also owe something to myself. As much as I have learned to care about so many online friends, I am realistic enough to know that not all may feel the same way. I would wish for this year to include more honesty and less drama. The time is here for the ones who have done all they could to dissuade PwMS from moving forward in their efforts to be well to face the ramifications of their choices. Approximately 10,000 people will be diagnosed with Multiple Sclerosis this year. Most of them will not hear about CCSVI, but will start expensive treatments that will will do little if anything except the welcome them to the MS world of DMD side effects. This has to change. Whose responsibility is that? The reasoning that one life is not worth so much is inherently flawed.
