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CaptainGeorge Roux

New member
Jul 30, 2010
St Petersburg
I was diagnosed with ALS over 15 years ago. I went through cat scans, MRI's, mylograms, countless nerve conduction tests, blood tests,and had tissue removed from my thigh that was sent to the University of the Carolina's, that came back positive for motor neuron disease.
Since the neurologist who made my diagnosis of ALS was relativly young, I got a second and third opinion, and they both concurred.
I started going to the MDA clinic in Tampa every two months and was examined by the neurologist there who gave me nerve conduction tests, and charted how the disease was progressing in me.
Initially I had weakness in my hands and wrists, some difficulty swallowing, and fasiculations in my arms, legs, and tongue. These symptoms got a little worse after my original diagnosis, and then either got better or went away altogether. After going to the ALS clinic in Tampa for something like two years Dr Steen (neurologist who was seeing me), said; "George, you either have the most benign case of ALS in recorded history, or we have have misdiagnosed you. I see no point in continuing to see you unless your symptoms start reappearing or getting worse. This never happened and I am currently healthy and work as a charter boat Captain.
I, however, think there may be something else other than misdiagnosis or an extremly benign strain of the disease. My maternal grandfather died of ALS, as did my maternal great-grandfather. Does anyone think that perhaps my immune system has something in it that may fight off the disease? Like everyone else, I assume, I tried all sorts of mega vitamin regimens, tried to get in on drug trials (was never accepted because I was never sick enough), tried every homeopathic remedy, had venomous insects sting me, etc. I also tried some pills that a friend of mine got from an Asian store called "Kow" or "Kau" (pronounced Cow). These pills were somewhat of a local phenom, as old people were taking them and claiming that they were "miracle pills", curing arthritis and other maladies. A local TV station did an investigation on them which ultimatly led to an FDA investigation, in which they found them loaded with Valium. They were quickly taken off the shelves (as they were being sold "over the counter"). I seriously doubt these had anything to do with my case, as I had only taken a couple of jars of them before they became unavailable.
I was fighting for my life and was trying any and everything I, or my family and friends could think of.
Why wouldn't it be possible to take some of my blood and make a serum out of it? I realize that the odds are extremly remote that it would work, but I'd certainly be willing to do whatever would be required of me to at least try. I know that I would have if the clock were somehow wound back 15 years. Let me know what you think.
PS: I have a huge folder somewhere with all my medical records if anyone is interested.
I like your thinking, Captain! It seems to me that there are certain accepted research paths but nowhere organized to collect and consider off-the-wall ideas that those of us who spend lots of time trying to figure this thing out come up with. I hope that someone with some science background will reply to your post. My off-the-wall idea of late is that someone needs to look at stuff that blocks nerve pain, like Novocaine and toothpaste for sensitive teeth to consider whether that kind of stuff can damage nerves after much exposure. Probably flaky, but who knows what has been studied and what hasn't? (If anyone knows a place to look at studies conducted and results I'd appreciate hearing about it!)
I like your thinking, too! Before they knew my husband had ALS, he received 3 series of IVIg treatments in February, March and April. The first one gave him a dramatic improvement (very rare with ALS, but not unheard of). The second - nothing. The third actually caused the beginnning of a rapid decline that seems to be tapering off. Still, because of the improvement after the first treatment, there might be something to an "antibody" carried by some. Maybe the first batch had it in it and the remaining two didn't. Who knows. Maybe you carry the antibody. Seems like it would be worth a try. What's your blood type?
I'm like you. I've been to two homeopaths(not good results),am trying chelation therapy I hope this coming week, and am really trying to alkalize my body's chemistry.I found out I was 6.25 and that is acidic.Normal ph is 7.4,so I'm doing everything I can so disease cannot live in my body.I love this line of thinking.It leads to new discovery.
Keep it up.
I heard something very very interesting a couple of days ago. I am a clinical Trial coordinator doing MS studies. At the moment we are trialling a drug in the Fumerate family. It is currently used in the treatment of Psoriais, and there is evidence that it may be neuroprotective for MS (hence the international Clinical Trial).

My husband (a neurologist) went to Sydney for a conference on MS and MND and the speaker said that the theory should also be the same with MND i.e fumerates being neuroprotective.

Good theory, I hope a pharmaceutical company runs with it. I sure would be a contender.

it seems so obvious this should at least be looked at. Have you approached any researchers or asked your specialist to do so? THis is the sort of thing, like clusters, that cries out for investigation
Thank you for writing your story
I agree with the others. You should contact Dr. Mitsumoto at Columbia University in Manhattan.
You didn't need to repost this Capt. You'll get better results keeping reply's together.

I no longer see any Doctors, as I have no symtoms. My blood type is A +
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