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Posted: Wed Jun 27, 2007 2:27 pm
by Lyon
oo

Posted: Wed Jun 27, 2007 3:54 pm
by elly
Bob do you know of any other neurological disorders that mimic ms where a patient has a positive mri, positive lp and ms symptoms?

My neuro tells me that it "looks" to be ms.
When i asked him what else it could possibly be if not ms he said he didn't know :twisted: :roll: .
I don't think we have lyme disease in Australia, i don't have lupus, CF doesn't cause mri lesions and a positive lp.

I just want him to say YOU HAVE MS...We all know that it is. I don't know what these other mystery possible illnesses are and neither does he.

The way that this disease affects people so differently really does lead me to believe that ms is a group of different diseases that come from the same family or strain of what ever it is.
This is obviously my own theory as well as instinct.

I think it's because i've seen the worst case scenario's too.
I also wonder why some treatments work one person and not another. And why are some people with the worst lifestyle and diet not affected and vice versa.
Why does someone's ms respond well to diet and another person will respond to dmd's...and every other combination under the sun.

Mmmm i don't know, i hope this makes sense :D :roll:

Elly

Posted: Wed Jun 27, 2007 4:09 pm
by HarryZ
Bob,
Why must you be so argumentative when I ask so little? All I ask is that you agree that I'm right....you don't even have to mean it :evil:

Bob
I'm not argumentative...ever :roll: That's all you have to do is agree with me on this issue and you can then leave the "argue" word out of the equation ...see, it's simple :D

Harry

Posted: Wed Jun 27, 2007 6:11 pm
by Lyon
oo

Posted: Wed Jun 27, 2007 9:24 pm
by elly
Thanks for the link Bob... why is it when i google something a whole lot of c**p appears :roll:

I just thought i would mention that when this fiasco started for me just after xmas i did have a trigger.

I had just given birth to my second child in September and when my sensory symptoms began in December it was at a time in my life that i was experiencing the most fatigue, sleep deprivation and stress that i had ever known...really i have never been so stressed and tired and i had no family support, only my husband who was great but he was at work during the day.

I'm not saying that this wouldn't have happened anyway.
All i know is that it did not happen for me when my life was in it's normal, familiar and comfortable state.

Now if only i could turn the demyelination button OFF and if only i could predict that this will only happen when i have such intense triggers.

Unfortunately my body decided to react in this hysterical way....why couldn't i just get an ulcer or even a mild heart attack 8O 8O :D

Elly

Posted: Thu Jun 28, 2007 5:22 am
by HarryZ
Elly,
I had just given birth to my second child in September and when my sensory symptoms began in December it was at a time in my life that i was experiencing the most fatigue, sleep deprivation and stress that i had ever known
Prior to getting married, Marg and I made a visit to her neurologist at the MS Clinic. This was in the spring of 1975 and Marg had suffered her first attack in 1971, just after graduating from nursing school.

We asked him about having children and he told us at the time that having children always seemed to mask MS symptoms during the pregnancy. But the stats showed the risk of having an attack within 6 months after child birth greatly increased and there was nothing one could do about this. He suggested we think about this long and hard before we made any final decision on what we eventually wanted to do. As it turned out, we decided not to have kids and Marg had 20 years of relatively symptom free disease. Who knows what would have happened had we decided differently. One can never know the course this lousy diseasae is going to take!
Harry

Posted: Thu Jun 28, 2007 5:33 am
by Lyon
oo

more thinking out loud

Posted: Thu Jun 28, 2007 6:05 am
by notasperfectasyou
Lyon wrote:One thing everyone seems to agree about, and what the long and frustrating history of MS research makes obvious, is that Multiple Sclerosis is mysterious and contrary.
I agree with that. Sometimes I feel like I need to take a break from this site because I feel like I'm banging my head agaist a wall. I suppose that's why we all care enough to be here, we are frustrated and we don't like all the mystery.
Lyon wrote:there is some voodoo involved .... nothing proves to make any sense.
I liken this entire circumstance to just about any state of affairs that precedes a major discovery. The earth is flat, that's a good one. I think that one day (hopefully soon) someone (not necessarily a well funded researcher) will figure this out, test the theory and conclusively understand the entire MS mystery. Until then, we'll argue over whether the earth is flat, global warming is real and how wrong it is to be rude to others on the message boards.

All I was trying to get at is, that the stuff we know and treat with CRAB's - I think it's all symptom. Similar to taking Provigil to deal with sluggishness all we really know about is the symptom. Although I have invested in Opexa, I still wonder if their thearpy is really just another very effective symptom fixer.

Getting at the cause (in my thinking) is a huge mystery. I think that there's several. A number of different things that can come along and cause the illness and it's symptoms. Smoking isn't the sole cause of lung cancer, non-smokers get it too. I know it's a tough topic to learn about no matter how much you google, but I think cross-presentation is part of how MS comes to be and I think there's likely a lot of ways it could come about.
Lyon wrote:What if ... the situation was really one of an environmental predisposition and genetic and/or other environmental factors??
Yup, could be. It's times when I start thinking this way that I would really love to know what it's like to be a "insider" in the research community. Perhaps this is why I liked the Weiner book so much. napay

Posted: Thu Jun 28, 2007 6:56 am
by HarryZ
Bob,
If nothing else, I think everyone with an interest in MS should temporarily divert their attention to some of the basics of the other autoimmune diseases....stand back from the tree to get a quick glimpse of the forest. I think most people would be surprised to learn that the "MS geographic gradient", the dramatically increased incidence in the "developed" populations in the last century, incidence being rare/unheard of in third world populations..these things and much more are shared with the majority of other autoimmune diseases.
I'm not too sure that the incidence of MS has gone up as much as we may think compared to many years ago. What is different now is the diagnostic tests available for MS although there still isn't one specific test that says yes, you have MS. Years back, a MS diagnosis for children was extremely rare. Now, they have MS Clinics in some Children's' Hospitals!

The researchers have also looked a geographic, genetic and other comparisons in great detail and have come up with some generalities. But in these areas, the results can be as varied as the theories of possible causes for the disease.

I've heard the same comments now that I heard 25 years ago although they are a bit more refined. What hasn't changed, however, is that nobody knows what causes this disease and other than continuing to treat the symptoms, there isn't any medication that has a truly meaningful result.

Harry

Re: more thinking out loud

Posted: Thu Jun 28, 2007 7:24 am
by Lyon
oo

Re: more thinking out loud

Posted: Thu Jun 28, 2007 7:45 am
by notasperfectasyou
Lyon wrote:
notasperfectasyou wrote:Until then, we'll argue over whether the earth is flat, global warming is real and how wrong it is to be rude to others on the message boards.
Hi napay,
It's so easy to take the wrong meaning on these message boards so I could be wrong...but I almost get the idea that you think I was being rude about something. If so, please make me aware so that I can scrutinize the message you were responding to.

In the meantime I can assure you that, if so, it wasn't intentional in the least and has to involve a misunderstanding :oops:

Bob
No, No, No - You're definitely not rude. Heck, I want to draft you for the next election. This is generally a very nice place. I love a good argument, it's when folks get overly inflated about how brilliant they are and you aren't - that's when I think it gets rude. But not here in this thread.

AN HONEST BOB, WHITEHOUSE 2008

There it is FOLKS!!!! Draft BOB!!!! No Lyon!!!

Posted: Thu Jun 28, 2007 7:52 am
by robbie
stand back from the tree to get a quick glimpse of the forest.
The forest is full of money trees.. :)

Posted: Thu Jun 28, 2007 8:03 am
by Lyon
oo

The 12 Seas and 3 Continents

Posted: Thu Jun 28, 2007 8:09 am
by notasperfectasyou
I'm no geolographer. I'm not staunchly opposed to any idea about what might cause MS. Given that, I have doubts about parts of the geographic arguments (not all of it, but parts). I think some sort of adjustment needs to take place whereby financial resources for diagnosis is considered.

In drug trials they have mathological gyrations they need to perform in order to adjust for the fact that one group has more disability than another. In this analysis, I'd like someone to adjust for the fact that the folks in Sudan don't really have access to the equipment and professionals we have, meaning - meeting the North American standards for diagnosis in the Sudan would cost as much saving several hundred lives there. 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

Posted: Thu Jun 28, 2007 11:58 am
by mom10789
i've read older books ms has no pain, ms does not give you headaches
which is all crap something making little holes in your brain has gotta ache so my question is has ms gotten stronger over the years