I suspect of a chemical that could've caused me ALS

[Nighthawk]

I had been reading this ALS forum over a whole year since I was diagnosed with this dreadful ALS disease by Dr. Rothstein at Johns Hopkins Hospital a year ago just based on the symptoms [Babinski, knees hiperreflexia, ankle clonus, bulbar symptoms such as drooling, slurred speech, atrophied tongue and, fasciculations on my left dominant arm as well as left foot drop]. It surprised me he came up with this diagnosis even before the EMG was performed by his team so, I take it ALS is easier to diagnose than I originally had thought. I am a 49 years old male, by the way.

I tried to share mis findings and suspicions with Dr. Rothstein about how this sporadic ALS could have developed in my body. I told him I had been forced to wear dentures since I was in my 20's because I had lost some teeth.
However at that time they fitted very well in my mouth and I didn't need any denture adhesive to hold them in place.

But, in 2010 all that changed. I started to have problems making my partial dentures fit in my mouth and I have to recur to use FIXODENT [manufactured by Procter & Gamble] to keep them in place.
I was using two tubes of Fixodent a week for that purpose. By early 2011, I started noticing changes in my speech and my swallowing. By mid-2011, I started noticing problems with my walking caused by my left foot dragging on the floor as I walked [also known as foot drop].
By the time I decided to go to Johns Hopkins to find out what was going on inside my body it was already too late.

If you doubt the damage that the ion Zinc contained in FIXODENT denture cream can do to your nervous system, you just need to GOOGLE it and you will find out articles published by the prestigious NEUROLOGY magazine back in 2008 about the subject of how excess Zinc in your body depletes Copper which in turn leads to neurological damage.
So, although I do NOT categorically affirm Fixodent caused my ALS, it MIGHT have triggered some molecular chemical mutations inside my body immune system that ultimately lead to ALS.

I tried to discuss these findings with Dr. Rothstein at Johns Hopkins but he shrugged it off in less than a minute perhaps because I either do not have a Ph.D. in neurology or he fears to face a giant company such as Procter & Gamble with such allegations.

Why do ALS neurologists despise their "patients wisdom" when they (the neurologists) are still shooting in the dark about trying to find out what really causes ALS?
Aren't PALS suspicions worth it at least to look into by neuros?


I am a chemist myself holding a B.S. in Chemistry and I had been working as a chemist for big pharmaceutical companies such as Pfizer, Eli Lilly, Aventis, Abbott, Watson, etc. for more than 25 years until this ALS disease struck me and I was forced to quit working and collect Social Security and Medicare since mid-2012.

I, myself...I am not into any ALS drug or medication right now such as Rilutek or Nuedexta.

Haven't yourselves ever asked how come since Lou Gehrig died form this disease back in 1941, PALS had to wait for 54 YEARS until FDA approved Rilutek back in 1995 to "treat" this disease and...so far it is the ONLY drug officially approved to treat this disease.
Since 1995...how many years have passed so far?
18 YEARS, ladies and gentlemen! 18 years and...still Rilutek is the only thing we have got...have you asked yourselves WHY is that?

Still, knowing that Rilutek has been around for 18 years and that it only prolongs life by a measly 3 MONTHS...Rilutek, STILL costs the whooping $1000 a MONTH....why is that?

How come companies like Pfizer and Eli Lilly chose to spend $$$$$MILLIONS on research and marketing to come up with "drugs"(if they can be called "drugs") such as VIAGRA and CIALIS respectively which do not cure any life threatening conditions while thousands of PALS die around the globe EVERY YEAR from this dreadful ALS disease?

How come last year (2012) FDA approved nearly 30 NEW DRUGS to treat Cancer and none to treat ALS?
Was it because famous people such as Steve Jobs or Patrick Swayze died of Cancer?

How come today AIDS has become a chronic treatable disease with lots of research being done and new drugs on the pipeline?
Was it because a famous athlete like Magic Johnson was hit by AIDS?

And then...we, ALS sufferers, WHEN should we expect a cure for this disease? in 2050? in 2080? in 2100?
How many of us will keep dying in the meantime and becoming just a memory?

Don't you think that if a famous person such as Bill Gates from Microsoft had developed ALS; a cure wouldn't have been already around the corner?

What are MDA and all the ALS Organizations across the USA doing other than LOANING us wheelchairs and walkers from their "loan closets"? Just PALLIATIVE CARE but no cure.
What about the money they (MDA) give researchers to find a cure for ALS? Shouldn't they be monitoring how this money is being spent?

When I worked for the private pharmaceutical industry, if you did not meet the requirements of your jobs description or you did not show results for the money they were investing on you...you would likely end up being fired or demoted. So, what are these ALS-researchers doing with MDA money anyway? Where are the results of their "work" on behalf of PALS?

I know we PALS are only 30,000 in the USA out of a 315,000,000 inhabitants which would be like 0.01% of the entire population but, that just does NOT justify the laziness and the way we are being treated by Big Pharma and ALS researchers. Everything in life is not just about making lots of money and GREED.

The Bush Administration was a disaster by blocking work on Stem Cells that, so far I believe holds the key to the cure for ALS by allowing motor neurons to regenerate.
The Obama Administration has been more sympathetic to the work on Stem Cells but, much more work needs to be done.

What are Big Pharma, FDA, NIH, US Congress, the White House, MDA, ALS researchers, etc. doing on behalf of us, PALS?

Lastly, there is a video on YouTube that let me heartbroken when I first watched it about what ALS does to people (even to young people, because the guy on the video is a young man).

LINK:

Normal people do not know what ALS is or what it causes to people like us, who are suffering it. That's why we need to raise awareness so this monster (ALS) can be defeated once and for all.

Thanks so much for taking the time and reading my post and may God bless anyone of you and your families.

Best regards.

 

[jwein516]

I completely understand your frustrations, and I share many of them. But I don't necessarily agree with everything you mention...

I've found that ALS doctors and nurse generally try to avoid conversations about possible causes because they really don't know the causes, and simply to have much to say about the matter. They've listened to my guesses as to the cause of my own, and didn't really give much of a response, but its never been because they didn't respect my view, but simply because they had nothing to add...

I completely agree that Bush impeding stem cell research was really bad, it doesn't mean we'd have a cure/treatment by now if Bush never impeded stem cell research (for one thing, a lot of the research that would've been done here just happened elsewhere, in particular Israel and Singapore.). Also, I hate to defend the pharmaceuticals, which do a lot to deserve their poor reputation, but they're businesses and develop drugs that are will be profitable. (Even if they didn't care about making billions, they couldn't spend money on a business model that forgoes any profit and still stay in business... then we'd have no drugs, no matter how useful or frivolous) To help with this, Congress created orphan drug laws, to give pharmaceuticals incentive to develop treatments for diseases that affect fewer people. It doesn't create a situation where pharmas are going to put the some amount of money into researching ALS that they do cancer or even acne medicine. But previously, there was incentive for pharmaceuticals because they would never be able to recoup development costs. Now they can.

There's quite a few other diseases, and even non-medical issues that the government could help with more funding. ALS isn't alone, and I learned from my experience informing friends and family of my condition, that most people know very little about ALS. Advocacy and raising awareness are the only way to deal with that.
Advocacy Day - The ALS Association

The NIH does fund a lot of ALS (and general motor neuron disease) research (particularly important because of the limited incentive for private industry funding already mentioned). And there has been a lot of research progress recently has been more in understanding the basic biology of how ALS works, and less in drug/therapy. Its frustrating PALS/FALS. Bbut I've worked in medical research, and fortuitous breakthroughs are the exception. The vast majority of medical research progress is extremely slow and incremental.
Abstracts 2012 | Symposium | MND Association

Actually, one of the issues that really slows down ALS research is that most trials are under enrolled, slowing down research, and possibly masking potential breakthroughs. Research progress could really benefit from more patients volunteering for trials.