MS and research: Ive been in night mode... - My MSAA Community

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MS and research

jackiesj
jackiesj

Ive been in night mode, miss my peeps!Lately Ive scanned thru the many degrees of treatment options.Good thought from one of you, who backs financially surveys, research etc?It is a web of info out there and an eye opener.We are a smart consumer looking before we leap.Madness does prey on the weak and infirmed, WAIT we are not weak or ignorant.We stand strong alone and together.What works for one may not for another and than again snake oil has been around since.....snakes.Just a thought.

8 Replies
oldestnewest

Good point😃 Jackiesj. Blessings---Jazmine

I keep telling people that, especially my sister who finds stuff on the internet that claims to cure everything. That big pharma colludes against cures that would put them out of business and kills off everyone who dares to say different. I think very logically and rationally and point out all of the inconsistencies in the websites and point her to the information that disputes her conspiracy theory sites. But what do I know.

232323
232323
in reply to Peruzzot

I totally believe in pharmaceutical companies looking for treatments not cures. They will go so far as suppressing cures.

One great documentary that illustrated this was “Cancer is Big Business” about a Doctor in Texas that had s non-chemo treatment that was effective at curing people of Cancer.

They changed the name of the documentary for the worse (IMO), making it sound conspiratorial “The Cancer Cover-Up”.

Anyway it shows the FDA battling the doctor in court to stop him from treating patients. The FDA also conducted raids on his facilities. It’s illuminating how far the FDA went to try to shut him down. Plus, going against the well funded expert legal arm of the FDA makes court cases so expensive and time consuming, they have the power to bankrupt most. Ultimately, the FDA failed to stop the doctor from practicing because they could not prove his therapy was ineffective.

It is a great example of the Medical Industrial Complex knows there’s no money in cures, the money is tin never ending treatment.

Peruzzot
Peruzzot
in reply to 232323

I agree that the pharmaceutical companies make big bucks at our expense. Some cancer treatments cost thousands of dollars but there is an end in sight one way or another for cancer patients. We ms patients get raked over the coals as well with many of our meds costing between 7-15 thousand dollars for a one month supply. We have to take the. For the rest of our lives which could last a very long time. Cancer robs you of your life. MS robs you of your quality of life but not your life.

Thankfully insurance covers most of that cost or the majority of us wouldn't be able to pay for it. Most of us make a considerable amount less than that per month before deductions are taken out of our pay.

The FDA is supposed to protect us from snake oil peddlers that may be selling stuff that is only harmful while lining their greedy pockets. But sometimes they get over zealous with treatments that may or may not work because the doctor or research didn't go through them for approval which is long, complicated, and expensive for businesses.

We are all just supposed to be patient and wait for the light at the end of the perverbrial tunnel.

I am always skeptical of conspiracy theories and always have been. The more fantastical they are the more skeptical I am of them.

232323
232323
in reply to Peruzzot

They now have clinics around the world and US that have a stem cell therapy system that seems to work with people who have not been diagnosed with MS for long.

It involves harvesting the patients stem cells, undergoing chemo to eliminate immune system, then replacing stem cells in hopes that your immune system will incorporate the stem cells to develop a normal (MS free) immune system.

It makes sense to me because when I was first diagnosed with MS I had a pretty bad attack. My neurologist ordered chemo. I was in the hospital for a week receiving a strong form of chemo (Cytoxin) every two hours.

Unfortunately, it didn’t work, my immune system rebuilt itself with MS all over again.

So I can see the logic in this.

I called a University that is connected with running these trials. Unfortunately, someone with my progression wouldn’t see the benefits of the people involved today because my myelin has been pretty much destroyed for good.

I have another call in and will ask them why not people with more progression? Sure the results wouldn’t be as dramatic, and I’m not that great off, but why not STOP any more progression past the level I am?

I’m basically going to say “yeah I’m not that great to watch get around, but I’d like to at least not get worse!”

Peruzzot
Peruzzot
in reply to 232323

One of the people in my in person support group did that procedure in Mexico last year and says that he's doing better since he did the stem cell procedure. He was using 2 canes before the procedure and struggled to walk even that way. Last I saw him he was still using 2 canes but was walking much better. We have another meeting next week so maybe he will only be using one cane by then. Can only hope.

I don't know why it can't be done for someone who is much further along in their MS progression or even give it a second try for people like you. The stem cell therapy is much better now then when it was first done, a lot has been learned since then.

232323
232323
in reply to 232323

Please watch on YouTube “Cancer is Big Business Opening Scene”. It is very powerful and only about three minutes long.

Hopefully, it will make you, and anyone else reading this, want to watch the whole documentary.

If anyone has seen it, please let me know.

232323
232323
in reply to Peruzzot

Did you hear the latest on Pfizer and their drug Embrel? It was found that Embrel, used for oteoalthritis, also cut the risk for Alzheimer’s by some extraordinary Like 68%. Their patent on Embrel had lapsed, so they discontinued researching that aspect and didn’t bother to inform the medical community of its findings. Theories abound as to why. A lot think it’s better to sit on great results like that Incase they go back to it, but why let everybody know and develop therapies from which they could not profit?

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