It's 1/2 way through 2014, still no cure

[JerryD]

I have been patiently waiting and watching and I can't see where medicine has made much progress in finding a 'cure' for MS. There has been some progress in reformulating and repositioning the DMD's that are FDA approved and on the market.
There is much 'smoke blowing' and blustering about 'stem cell replacement therapy' yet it is difficult to discern if this is a viable treatment for the MS community as a whole. The fact remains that , in the U.S., there are about 500,00 people suffering from this disease. The number is in the millions worldwide. This situation is unacceptable to me. How about you?

[SNOOPY]

Jerry, I have been watching for 28 years

I don't believe in a cure for MS...in my lifetime.

[Dale76]

I have been patiently waiting and watching and I can't see where medicine has made much progress in finding a 'cure' for MS. There has been some progress in reformulating and repositioning the DMD's that are FDA approved and on the market.
There is much 'smoke blowing' and blustering about 'stem cell replacement therapy' yet it is difficult to discern if this is a viable treatment for the MS community as a whole. The fact remains that , in the U.S., there are about 500,00 people suffering from this disease. The number is in the millions worldwide. This situation is unacceptable to me. How about you?

Honestly I hope they find a cure. It won't be for me however, at this stage I'm past the point of hoping for that or being a lab rat for a new drug. I will believe it only if it happens, I don't believe in promises of " improvement", I want full recovery or nothing because Improvements are an individual perception and not a cure.

I watched 3 grandparents die of cancer, in the hospital with a thousand tubs hooked up pumping this and that in to try to make them "comfortable " and to "help" them... Guess what, they still died , they died rapidly and they died in pain and suffering. If given a choice to do their final days over I know they would have all died at home in their favourite chair with none of that crap...

I'm not going out that way, I'm not afraid to die and I'm not going to add to my suffering well I'm still alive or give myself any false hope.

Btw I have PPMS pretty bad so I'm not expecting everyone to agree with this or understand it even but that is how I feel.

[J-Bo]

I understand completely, Dale. I'm not too bad off yet, but if this keeps progressing at the rate that it has been so far, I'm not interested in living through old age. My PCP wanted me to go on a statin to reduce my cholesterol and I felt like saying "You want me to take something that will make my legs hurt even worse than they do now so I live and suffer longer*?" But I didn't. I just said "no" and left it at that.

*I know, there's no real evidence that statins make you live longer anyway.

[ElliotB]

MS is an extremely complicated disease and unfortunately it is going to take some time (likely a very long time) until it is figured out and a cure is found. My dad was diagnosed with MS in the 60's and I was surprised when I was diagnoses last year that little more is known today than there was 50 years ago.

[JerryD]

And yet, we landed a man on the moon in around 10 years. Food for thought. Maybe NASA should be working towards the 'cure'.

[dyin_myelin]

We need an X prize for curing diseases rather than technological advances. Declaring a "war" on cancer and drugs did very little, but if you have hormone positive breast cancer there are cures-tamoxifin, it's something. We are curing MS in small increments, Rebif can help a CIS from going full-blown, and Tysabri can arrest the disease in 1/3 of cases.

[Lopx3]

We need an X prize for curing diseases rather than technological advances. Declaring a "war" on cancer and drugs did very little, but if you have hormone positive breast cancer there are cures-tamoxifin, it's something. We are curing MS in small increments, Rebif can help a CIS from going full-blown, and Tysabri can arrest the disease in 1/3 of cases.

The war on cancer, or on anything else, is not meant to be won but to be sustained. It's a business motive. It reflects how organized medicine works overall: creating expensive technologically "advanced" treatments of disease, not their prevention or cure. There is no money in the latter approaches for the medical business.

If you look at the war on cancer you can find the cancer industry and the cancer charities suppressing and omitting critical information on cancer from the public and resorting to deceptive cancer statistics to educate them that their way of treatment is actually successful (read the epilogue of this piece: google/bing "A Mammogram Letter The British Medical Journal Censored"). But this war has been a near entire failure.

Tamoxifen is hardly a cure for no other reason that it causes uterine cancer. Practically nothing, with perhaps a very few exceptions, has ever cured anything the business of the medical orthodoxy has produced. People have been totally misinformed about this business.

[JerryD]

I understand that the disease is complicated. It just seems to me that, after 2 or 3 hundred years, the medical world would have some kind of handle on the disease. It is kind of disheartening that some MSer's are so disillusioned. This disillusionment leads to distrust of the medical and pharmaceutical establishment and the practitioners. Sorry for sounding like a 'conspiracy' theorist. It's just that I don't believe that all of the energy to 'cure' this disease is in the patient's best direction.

[golfore]

Jerry, Don't be sorry. some people still believe the world is flat. lol.

MS is not caused by a bacteria, virus, or other germ kind of trigger. What caused or triggered my MS, likely didn't trigger yours.

Exactly what energy to cure MS isn't in the patients best interest?

[Myoak]

A cure may be near if the cause is HERV activated by EBV and anti retroviral drugs like those used in HIV are effective in MS as this study posted in the Charcot Project thread indicates:

HIV and lower risk of multiple sclerosis: beginning to unravel a mystery using a record-linked database study

http://jnnp.bmj.com/content/early/20...7-d2a8dbcff92a


Relative to the cause, origination, and treatment of MS this study of HIV cases and controls is incredibly interesting. The possibility of EBV causing HERV to replicate and MS originating from immune response to HERV is supported by these findings. If further research proves this is true present DMT’s will be trashed and replaced by an anti retroviral drug for MS.

A nightmare for pharma but a dream come true for MSers.

Certainly, even if true approval is such a slow process that it will take years for large trials and FDA approval. But doubtless there would be early adopters.

[Mamabug]

I don't expect there will ever be a cure. Does that mean reversing damage that's occurred in our brain?

We have ways to manage symptoms and decrease progression. I'm good with that.

I'm curious. Does anyone have a Dr that expects a cure? A return to normal? When?

Not trying to be pessimistic. And, I'd listen to the experts.

~ Faith

[Myoak]

If an anti retroviral drug causes MS to halt and allows repair to happen that drug may be recognized as a cure by young MSers who still have brain reserve capacity to accomplish work-arounds of present damage.

That scenario may not meet a technical definition of “cure” but if the practical experience is that MS halted and function is restored then usage of the term “cure” may graciously be tolerated for that group of younger MSers.

BTW, when the brain’s reserve capacity is exhausted and there is no longer relapsing and remitting in RRMS, SPMS is the result. That is important for MSers to be aware of. Hopefully, it encourages thoughtful planning to preserve that capacity early on.

Perhaps, like Faith, many doctors and drug companies are not expecting a “cure” ever. Giving up a lucrative practice or billion dollar drug business and retraining would be terribly inconvenient.

I’m not convinced those kinds of experts are preferable to the experts who researched data involving 5 million people and found MS 75% less likely than in the 21,000 who were HIV positive. Facts are facts.

Older MSers who realize repair probably won’t follow the halting of MS may not think of an anti retroviral as a cure; that is certainly understandable. But younger MSers who still have reserve capacity for repair may characterize it as a cure if MS is halted and function is regained; that too, is understandable.

It is exciting to see progress toward cause and cure (or prevention of progression if you are an older MSer). The study referenced earlier is worth contemplating. Even if the science and statistics are of little interest the possibility of finding a cause and cure will be encouraging.

Listening to the experts is good advice; choosing which experts is better advice. The dead-enders who believe there will never be a cure will never earnestly look for one. Others believe in seek and you will find; listen to them, progress comes from that direction.

If an anti retroviral drug stops MS from progressing because MS was initiated (cascade of events leading to MS) by a virus it will be an outstanding advancement toward finding both cause and cure for MS.

Here is the study again:

HIV and lower risk of multiple sclerosis: beginning to unravel a mystery using a record-linked database study
http://jnnp.bmj.com/content/early/20...7-d2a8dbcff92a

[J-Bo]

Sorry if this is a stupid question, but all I can see is the abstract...is there a way to read the whole paper? It looks interesting. Thanks for posting.

[KatieAgain]

Sorry if this is a stupid question, but all I can see is the abstract...is there a way to read the whole paper? It looks interesting. Thanks for posting.

Hit the link again. To the right it has a heading called "This Article." Underneath abstract, is a PDF file. It will open up to a much more detailed abstract...about 6 pages. Hopefully that is what you are looking for.