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Wednesday, June 5, 2013

SELF-HELP!

Pretty amazing news today, appears to qualify for Land-ho, not just a stepping-stone:

Multiple Sclerosis: Phase 1 Trial Safely Resets Patients' Immune Systems, Reduces Attack On Myelin Protein

Since the intervention is not pharmacological, perhaps the clinical trials will not take a decade for a change. REJie can't imagine the FDA subjecting patients' own cells to safety review - but stranger things have happened. Still,  all those lesions are turning REJie into a naive optimist today, maybe the process will be reasonable for once.


Monday, June 3, 2013

Another Stepping Stone


MS seems to be a chronic game of timing - how long can you balance safely on one DMT stone before you start slipping off into the river? Is there another stone in the murky water that will support you and keep you mostly dry? Can you find it in time? If you do, how long can you stay - enough for a respite?

A boulder seems to have materialized: Tecfidera, such a sonorous name, on par with Tysabri! The lovely aquamarine capsules contain a mold-inhibitor, twice a day by mouth. This medication pairs well with my bird control (vertebrate pesticide) tablets, Ampyra, a chalky-white Plain Jane with a vaguely bloodthirsty name. Ampyra and Tecfidera are my best boulders now, and I hope to remain upright upon them for a good long spell. 

Thursday, February 7, 2013


                            This darksome burn, horseback brown...

                     What would the world be, once bereft 
                     Of RATS and wildness? Let them be left, 
                     O let them be left, wildness and RATS; 
                     Long Live the RATS and the wilderness yet. 

- with abject apologies to Gerard Manley Hopkins

Nerve Fibers Continue To Survive In Multiple Sclerosis 

It was previously thought by most scientists that once axons lose their insulation they are unable to function. So it was a surprise for a team of researchers who found that axons in rats with MS could survive for long periods even after losing myelin (the electrical insulation). 
LOVE THE SKIN YOU ARE IN!


Cells Forged from Human Skin Show Promise in Treating 

Multiple Sclerosis, Myelin Disorders 

Wednesday, September 12, 2012


Nothing heroic about Ann Romney's MS



Stanley Greenberg finally (!) writes the very, very obvious from South Burlington, Vermont. 
Thank you, Mr. Greenberg.

REJie is certain that Mrs. Romney had more treatments than just riding a horse, and no one, rich or poor, should suffer from MS. REJie is also certain that the MS patient community has been very generous with their sympathy for Mrs. Romney's travails, and has not expressed anything like envy of her wealth or indignation toward her maintaining profound, deafening silence about Mr. Romney's plans for said community's healthcare, should he have the opportunity. The print, television, and online media have been equally well-bred.

Judging from Mrs. Romney's performance at the GOP Convention, she has her MS under control, whether with horses or other therapy. Good on her! From what REJie has been able to glean, this has been the case for her pretty much since the initial, and rather severe and prolonged, episode. All good.

It seems that the MS patient (and doctor!) community has been patiently (yes, ba-a-ad pun!) waiting for Mrs. Romney and her compassionate husband to say, "Just kidding! Had to get through the primaries, but people with pre-existing conditions WILL be covered if we become First Lady and POTUS!"

REJie suggests that MSers keep calm and carry on. Holding our collective breath until the GOP presidential candidate comes to his senses, if ever, is really, really bad for our overworked synapses.

Tuesday, August 28, 2012

The Six Hundred Pound Gorilla 
at the GOP Convention

Ann Romney gave a moving speech tonight on behalf of her husband. She is a real performer, garnering all her strength and focus, and not slurring a single word, as happens sometimes if you are tired, overheated, and have MS. Apparently, she either does not have this problem, or is masterful in compensating for it, or is pumped full of steroids and Provigil.

No one should have cancer or MS or both. No one, especially women, whom she extolled. No one, male or female, should be financially bankrupted by these diseases, which often bankrupt an ill person's health at the same time. 

Ms.Romney looked vibrant. She professed knowledge of women's hardships. (I will pretend that she knows that men get seriously ill too.) Nowhere in her non-storybook story did she mention that insurance coverage (which she probably had all along) was never an issue for her. Not only did she not have to struggle to keep her job for the medical benefits, she was safe in knowing that she could afford her treatment regardless of the cost.

The "MS scare" Ms. Romney described could have been a plain old relapse, or, more likely, a pseudo-exacerbation brought on by the rigors of the campaign. It made for excellent copy. In no report did I find what disease modifying treatment Ms. Romney takes, nor the cost of such treatments in general, which the plebeian MS sufferers,  a majority of them women, have to contend with. 

So, the gorilla wants to know: what will these women do if her funny, clever husband does as he intends, and, upon becoming President, works ceaselessly to repeal the Affordable Care Act, with its assured coverage for pre-existing conditions?

Tuesday, August 7, 2012


MS Advocates Split With Romney Over Obamacare

People with multiple sclerosis have treasured Ann Romney as an advocate. But her husband's policies are bad news for them.