This Is MS Multiple Sclerosis Community: Knowledge & Support

Amelia, GWA,

I think there are so many cases out there like this, and yet you still see the pharma companies talking about how their drug reduces lesions. YEAH??? SO what?? That is obviously not a good metric to measure progression, its just a hyped number. It something they say they can do, even though it doesn't really affect clinical outcome. Grrr..

viper,

If you have not had any symptoms since you stopped the aspartame, it is possible that you are sensitive to the sweetener and the "flare" was not an MS issue.

Any time I consume aspartame I have severe vertigo, so I know this stuff affects my brain. The vertigo goes away in 5 ot 6 hours after ingestion of the sweetener, but my MS stays. I have not gotten ahold of aspartame in over a dozen years and I watch what I eat and drink like a hawk.

gwa

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GWA,

I haven't touched it since shortly after I had gotten out of the hospital a year ago. I've also not had any other issues. I'm not saying that aspartame was the cause, but to me, it is suspect. I am going in for another MRI in August, and I hope it looks better than the first one. I've been taking Rebif since august of last year so that could also skew the results. Dang it.

The only think that could be symptoms of MS that I have, are muscle spasms/twitches, like in my forearm/bicep, or my thigh, or calf, or my eyelid or eyebrow. This probably happens to me 5 times a week for a very short period of time, if I flex the muscle it is affect, it stops. I'm not sure if it is because I don't exercise enough or if it is a sign of something worse. With my luck it would be.

Brock

First of all, I AGREE with Marie who wrote: "I realize others have other points of view but I ask you to let me say right out here and now from my perspective it is obvious that MS is not what they think it is and from my point of view autoimmunity is a red herring."

Second, to Viper: Given that I am the "insulin girl" here, I see your exacerbation and consumption of diet soda (with aspartame) quite logical. I know that Splenda (another artificial sweetener) is 600 times sweeter than sugar! (I can't remember the number for aspartame, but it's similar.) I think the "sweetness" triggers insulin production; by the way, it's the insulin that ferries (See, Marie, I use your word now!) blood sugar to the cells to be stored as fat. We've all been brainwashed to believe that it's the calories that matter--when actually it's the amount of insulin!

In my opinion, this fits with what gwa wrote, "If you have not had any symptoms since you stopped the aspartame, it is possible that you are sensitive to the sweetener and the "flare" was not an MS issue. " Maybe after stopping the sweetener, your pancreas "re-booted" to normal and stopped the excess insulin production?

I think the insulin could be causing vascular damage--hence the recent paper by the Louisiana State researchers about cerebral endothelial damage. If only scientists can consider something other than "autoimmunity!"

brock that is great that you may have identified a sensitivity. maybe you will not get any worse!

and yea, if there's no exact correlation between lesions and symptoms, well then what the hell are these drugs FOR. sheesh. i'm not takin any drugs anyway, for now.

i agree that it's not all about autoimmunity too. but i don't rule out immune system dysfunction, either.

yea i've been thinking that 'ms' is just a handy label for a diverse array of unnamed conditions. like just saying "cancer" without specifying what kind.

First, to go back to the original question, I don't think the appearance of an MRI is any evidence of disability. Out of two secondary progressive people, my scan looked absolutely frightening, a mass of storm clouds gathering and I had an EDSS of about 7, Marie with her four lesions had an EDSS of 5.5. From seeing mine, I might have expected her to have a much lower rating. I was first shown a scan which wasn't mine and showed lots of little specks all, typical of a gadolinium scan showing punctures in the blood brain barrier. When I eventually saw my scans, six months later, courtesy of a radiologist, without having the subsequent, improved scan for comparison, I would have been truly frightened. Six months later, some peripheral lesions had actually disappeared. Since I was going downhill sp rapidly when I had the first scan and with SPMS you are only supposed to get worse, I can obviously only put this down to the antibiotics I had been put on by my husband, after discussion with the people at Vanderbilt, so the main component was certainly not auto-immunity. Of course, whether the antibiotics had anything to do with it, you must make up your own mind, but since that day, nearly three years ago, I have done nothing but improve. More slowly now, but improve nonetheless, even in the periods of intermittent therapy when I am not taking anything. My cognition is better than it has been for years, which seems to me a better gauge of improvement, since what is the point of being able to walk miles and miles each day, if you can't use you brain.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Sorry to be slow jumping in, just saw this thread.

My daughter has horrible MRI's
(1 initial brain & cervical and 2 follow up brain scans)
The cervical was really frightening.
As for the brain; many lesions, always some that are contrast enhancing. With both follow-up MRI's the finding was a severe pattern of active MS with progression from the previous scans.

Symptomatically she presented with numbness, tingling, clumsiness and loss of strength in her left hand/arm about 2 years ago.
Strength is back, still a little numbness and clumsiness left from that 1st attack, but much improved and mostly just in her fingers now.
Other than that she has had one short bout of optic neuritis that has cleared, no other symptoms at all.

Based on her MRI's she should be a real mess.

We did have a discussion about this here awhile back and I think it was Wesley who speculated that in addition to lesion location, age might also play a role when trying to come up with any useful correlation between lesions/disability.
Perhaps a younger person with a more plastic brain would be able to compensate, even with multiple lesions, more readily than someone older?

I see the logic there, but I have to say that I'm a member of a group for parents of kids with MS and I see reports of the same sort of discrepancies between MRI results and disability there that seem to be so common in the MS population as a whole.

I refused on the last Dr. visit to have my daughter "shoot the tube" again. (as gwa put it ) At this point the only purpose I see it serving is as a scare tactic to try and convince me to go ahead with the novantrone the neuro has suggested and I've already said no to.

Certainly does not seem to be much real understanding of something the pharmas place so much emphasis on.

It really makes you wonder that if they pulled the "average Joe" off the street and preformed a MRI on him, what would they find? Lesions and he has no symptoms? BOOMC! He is diagnosised as having MS. But would he have ever developed symptoms enough to go to the DR or have a MRI? Are the researchers even listening to the general MS population?

Yeah, really... I wonder what percentage of people would have lesions if they just started randomly picking people off the streets?

yea when you think of all the things ppl can do that kill brain cells, right down to sneezing... i never before wondered what KIND of brain cells those might be... lol