This Is MS Multiple Sclerosis Knowledge & Support Community

napay,

I totally agree with this statement:

"While there might not be MS there, I think it's more likely that it's not being diagnosed - they have other things to do with the limited medical money they have. Just thinking out loud. napay"

We have problems in our own country with supposedly some of the best physicians in the world who are unable to diagnose MS even with all of the latest diagnostic instruments.

gwa

oo

That was a lot.

I'm not necessarily opposed to the paracite theories.

I'm going to go for the day soon too, but here's what comes to mind.

While science has discovered a lot in the last 20 years, there's obviously a lot that has not been discovered. In the next 5 years I expect a lot of new knowledge will occur and the fact is that these are all things we don't know today - my flat earth analogy.

Thinking about all the stuff we have today that's less than 5 years old, you can kind of see I'm forming something of a Monday morning quarterbacking perspective.

EVERYTHING TO KNOW AIN'T BEEN DISCOVERED YET!

Obvious? yes, but this doesn't always play out in how we "discuss" this stuff. It's all circumstantial evidence. Curcumin prevents EAE in rats. Big whoop? I've not seen that anyone's done anything with this yet. The discovery of the Dendritic cell is not that long ago, like in the 70's. Think about that. Something like that is sort of amazing. Science is discovering smaller and smaller bits of organic stuff, we're now down to parts of cells and the cytokines they spew. Maybe there's stuff smaller than a cytokine we need to know about.

We armchair researchers infer a lot of stuff. Not that there's anything wrong with that, but I know lots of us are keeping the GNC store very busy because someone figured out that ascorbic acid blocks NF-KB, or what ever thing any kind od supplement is supposed to do. I'm fine with all this, I participate in it and at the end of the day I know I'm dependent on a guy in a white lab coat somewhere for the ultimate answer.

I'm rambling. I'm tired.

Back to your post, fasinating question. The Native American's lived here for a long time with no need for toothpaste. There's a really good article in National Geographic a couple months ago that talks about the founding of Jamestown - I'd recommend reading it because it says a lot about this whole concept you have presented. Industrial society and how it's wrecked havoc on health. Jamestown is a great study because it's recent, tangible for the average American and very true and documented.

It's a twist on the argument I made about third world countries and just as valid. I mean, where did AIDS come from and stuff like bird-flu? they seem relatively new.

Til, tomorrow ------- BOB 4 PRES!!!!!

napay

Harry and Bob i'm just curious about how your wives are doing. How long have they been diagnosed?

Something i often wonder about is why didn't i have this episode after the birth of my first son? Why was this ms thing happy to stay dormant and cause me no problems then?

This may sound like a very simple way of looking at the situation but when my first son was born even though i experienced all the usual tiredness and stress that comes with having a baby, i was able to rest or sleep whenever he slept. So everyday i could do this if i felt i needed it, especially after many hours of comforting an unsettled baby for hours during the night. I believe this helped to keep ms at bay (if i had it then).

My diet was also much better at that time....the second time it was a disaster I also believe that this was another trigger.

My husband and i would love to have a third child and we probably will.
My neuro said that there is no reason why i can't.
I wonder if the third time i can prevent another flare by resting, eating well, supplements and a dmd.....who knows but these things were not present when i had my second child and were when i had my first ( not the dmd) so i believe that played a huge role in what happened.

Of course I'm not saying that all women who have children, are stressed, tired and don't eat well will have ms.
It was just the perfect environment for ms to rear it's very ugly head in my body. I seem to have good soil for this disease

Elly

There's pros and cons to this pregnancy thing. Very quickly I'll explain my wife's situation. She had an exaserbation during pregnancy and could not take steroids without risk to the child. The exaserbation perpetuated until it could be dealt with post delivery. By then significant damage had been done and she had very significantly increased disability and could not return to work. Just something to think about. Perhaps they have meds you can take now, but they didn't 9 years ago. napay

oo

Hi Bob,

Gosh, I always thought that it would be wonderful if we could finally agree on something but now that it's happened....I feel a little queasy

Take 2 gravol before you go to bed and you'll feel much better in the morning

On the other hand the majority of the medical field are in agreement that actual incidence is rising per capita

Yes it is definitely rising and I think one big reason is the diet that so many people have been on for several years. So much obesity, especially with young kids which leads to all kinds of health problems and quite possibly to an increase in MS.

I can agree that from your perspective things haven't changed a lot in the time you've been involved and it's hard, maybe impossible, to keep an open mind that long. What I've always wondered though is that, since you have yourself so convinced that "this is the way it's always been and the way it's always going to be.." how could you ever allow yourself to be swayed when something with merit does come along?
Bob

I can certainly see why you would have that perspective about me. Yes, I've seen the way "it's always been" and that has produced pretty much nothing in the way of real progress in solving this disease. I would not agree with you, however, in saying that I would never be allowed to recognize anything of merit when it comes along.

There are far more medications for the treatment of MS symptoms now than ever before. Heck, take histamine for example....that made a huge difference in the suffering that my wife experienced every day. I was skeptical about this drug in the beginning but after Marg used it for a short period of time, the effect was quite impressive.

Pain management is much better as well. It wasn't too long ago that many MS docs told us that MS patients didn't suffer from pain!! Oh really!!!
Drugs such as Sativex and Neurontin have been quite effective for many.

When something good does come along, Bob, I'll be the first to say so. But over the years I've been able to sift through the rhetoric and figure out what has potential and what is simply another revenue producing drug for Big Pharma.

Take care.

Harry

Elly,

elly wrote:Harry and Bob i'm just curious about how your wives are doing. How long have they been diagnosed?

My wife was diagnosed in 1971 the year she graduated from nursing school. We didn't know each other then and didn't meet until 1974.

She went 20 years with relatively no symptoms and then in 1991, she woke up one morning and her foot started to tingle. By 1996 she progressed to SPMS. She started on Prokarin in 2000 and her symptoms improved a great deal. In March 2001 she fell awkwardly and suffered a triple spiral fracture of her left leg (the good leg of course!) That did more damage to her health and MS than all the previous years of MS. The terrible spasms started and just last year she ended up with a severe infection in her right leg. During this episode her optic nerves became worse and her eyesight deteriorated big time. She's also lost a fair amount of fine motor movement in both hands during all of this.

So how's she doing?....let's just say really struggling at the moment.

Something i often wonder about is why didn't i have this episode after the birth of my first son? Why was this ms thing happy to stay dormant and cause me no problems then?

Because the human body can compensate a fair amount when neurological damage takes place but there comes a point in time when it simply can't and that's when you go down hill. My wife Marg suffered sight damage last year and the eye neuro told her that the damage he saw had likely happened years ago. But he stated that there are millions of cells in the optic nerves and you don't need all of them to see properly. Then she suffered just a bit more damage (could have been from the serious leg infection) and that put the problem "over the edge" where the optic nerve simply couldn't handle the problem any longer.

Just one more frustration in living with this lousy disease.

Harry

Hi robbie,
If your point is that the drug companies are getting rich from all of the autoimmune diseases, you're right! Add them all up and the cost (and profit) are unimaginable.

It would be different if they gave us something to really smile about , but what do we have for the billions really ?

oo

oo

I wish you folks were more boring so I could ignore you and stay focused on work! But here you go, dragging me back in.

Bob wrote: “Simultaneously MS (allergy, asthma, autoimmune disease) incidence mysteriously increased by leaps and bounds.”

It’s a mystery towards which we could throw a few tidbits of facts with regards to the mid-20th century. Just to mention some things that come to mind without them being definitively related to autoimmune disease incidence:
1. Doctors making house-calls. There was a big shift in that practice in the 40’s, 50’s and 60’s. A doctor making a house-call probably didn’t have the latest and greatest MRI machine in his little black bag, considering they weigh several tons and are more a recent creation. But, as people were going to hospitals and clinics more and more instead of waiting for the inefficient house-calls, they were brought further into the comprehensive medical care and the larger research studies being conducted. Just a few decades before, hospitals were considered to be like hospices of today, a place where you go to die.
2. In the 20s-30s, perhaps even into the 40s, since many doctors weren’t particularly familiar with or even aware of the concept of autoimmune diseases, they went with the more obvious diagnosis that their tests provided. Unfortunately for many women, lupus (which I don’t believe was noted in the literature until perhaps the 20s) gives a false positive result for syphilis. Just think of the social stigma of a syphilis diagnosis for a completely innocent woman back then when divorce, showing an
ankle at the beach, and women smoking were severely frowned on, and you don’t question the doctor.
3. Tuberculosis and polio were very big concerns back then. Of course cancer was perhaps the worst but it was considered a total black box. A cancer diagnosis was only whispered, for TB you needed to be committed to a TB sanatorium and hope to get out someday, for polio you needed an iron lung. So something new like MS probably didn't get much attention until there were a lot more recognized cases.

Getting back to the question on MS strains, could there be differences in MS based on the causes? Just thinking out loud but as an example, perhaps a one-time exposure to heavy metal or some cytotoxin leads to one initial MS episode with no further progression, but ongoing stresses that awaken a latent virus hidden in the cells could lead to recurring bouts and progression each time the virus gets expressed from a cell. If we could relate the different appearances of MS to different potential causes, then we might understand better. It might be we would even see changes in the types of MS cases over the years, like we see changes in the types and severity of flu.

Another way to think of the question: Is MS a strain of autoimmune disease? Perhaps many of the autoimmune diseases have underlying similarities but show up as different diseases or strains based on the tissue in which they occur primarily. The word 'strain' might be somewhat vague. To me it suggests genetic differences in mice or viruses or some other organism.

Wesley

Lyon wrote:Jamestown article you mentioned earlier?

Bob, Here it is. Took some surfing to find.

http://www7.nationalgeographic.com/ngm/0705/feature1/

It's a long 5 page article, but it's really good if you read into the history the points we're discussing in this thread.

In a very condensed brief, Native American's were doing just fine and had a stable culture and biological relationship with the plants, the animals and the land. Europeans came and introduced a lot of new stuff including animals, plants and microrganisms. The cycles of nature got disturbed and the ecology changed dramatically from what it had been.

No one saw it coming and no one had enough knowledge of science to comprehend the ways tiny little details could have such a huge impact on the biology of North America. Science was not advanced enough for them to know about these things we can Monday Morning Quarterback about today. I'm saying we just might be in a similar situation with MS and one day we'll look back and say, "WOW, can you believe there was a time they didn't understand MS?" napay

oo

wesley
i know very little about research and ms for that matter. in canada Doctors didn't stop making house calls due to machinery, they stopped cos there were way too many people especially coming back from the war. in Ontario its terrible you can wait up to 2 years for an MRI. it just doesnt make sense for them to make house calls. our GPs know very little about research and what is being studied. my GP is great, i can tell him what i'd like to try or what ive read and he'll do some research on his own to try and help me or stop me if necessary.
and why IS MS showing up in Japan after all these years????
sorry to interrupt your thread you guys have researched MS for years and i'm just learning as i go along, so i have lots of questions and southern Ontario has exploded with MS over the last 5 years.
thanks again, shelley