Hi Nancy,

I didn't notice your comments earlier . . . I guess I was on my tangent about smoking at the time or something. :rolleyes: :D

I definitely feel for the people who are struggling to figure out what's wrong with them (in addition to the one's who know ;)). If it is MS, they'd probably want to consider treatment options as early as possible. If it's not MS, then having this information will likely be very helpful too, so that they can consider other treatments or approaches to managing what is going on in their bodies.

It's not just that though. There is the whole validation-thang that is very important to our emotional well-being as well. :hug: Unfortunately things aren't always so cut and dry, and we do need to weigh up the amount of stress and effort we are willing to put out to get that dx too.

Funny enough, Holly, I was just thinking about QUIX this morning. I got into a discussion about lesions on another forum, and even after all these years of research, many of us don't really conceptualize what is happening to our bodies when we get them.

Since this particular thread is one that people seem to be referencing quite a bit still, perhaps it's the best place to post the information. There are sites that offer very technical descriptions (complex/hard read) on what "they" THINK is happening to cause lesions, like this one:

http://www.neuropathologyweb.org/cha...apter6aMS.html

... but after reading all that (combined with the knowledge I've gathered), I still wasn't absolutely sure that I understood it completely. In simple terms, I understood there were three versions/stages of brain lesions that might occur with MS, including:

1. Gad-enhancing inflammatory lesions (which are more transient)
2. T2 hyperintense (non-enhancing, indicative of "damage")
3. T1 hypointense (black holes)

I checked my understanding with our resident technologist, Rex, and he referred me a site that describes our lesions very clearly and simply. It was ALSO written by QUIX :):

http://www.medhelp.org/health_pages/...show/23?cid=36

I think that having a basic understanding of what's happening with the disease process is very important, especially since we may continue to decline in spite of few relapses and/or any evidence of damage apparent on a MRI.

Cherie

Hi, guys. I figured I had overstayed my welcome, but, looking at the last few comments. I have also written blurbs on "How you can have MS with a negative (yes, negative) MRI" and one long one, degarbling the McDonald Criteria.

They are both hellishly long, in keeping with my propensity to go ON-AND-ON but, the folks on my forum say they are very clear.

Would anyone like to see them here?

Quix

Cherie, I didn't see your reference. Thank you very much for your words. It pleases me that I can make things clearer and hope that it helps someone.

Quix

Hi again QUIX :) . . . I was just talkin' 'bout you!

I went looking for those two sections on the index, but don't see them? :confused:

http://www.medhelp.org/health_pages/...show/22?cid=36

Also, in your "Multiple Sclerosis in General" section, you have a blurb on the basics of what MS is, how we may get it, etc. One sentence reminded me to mention something else (but maybe you covered it off in another section already):

"Finally scientists in the field also believe that a major trigger is an infection, possibly many years before the disease gets started."

Most people know that psuedo-exacerbations are sometimes caused by infection, but if the infection is not treated in time, it can also lead to a true exacerbation. I'm not sure if this is true for those only with brain lesions (I imagine it is :confused:), but I personally know it to be true for those of us with spinal lesions.

I wondered if you considered including this in your documentation anywhere (or if you have already), as this is the ONLY trigger for relapses that "they" seem reasonably sure about . . . once we are dx already?

I just thought I'd mention that because this happens to be one of the most important aspects to managing the disease (for me); TREAT INFECTION.

Cherie

Hi, Cherie, good question. As a clinician I have a different (slightly) perspective on the effect of infections.

First, absotively, posilutely get all infections treated ASAP. The longer the infection hangs around the more the immune system will ramp up and the worse the relapse can be.

When an infection causes a pseudoexacerbation it is likely due to the fever. Any rise in core body temp can cause one. Nerves damaged by demeylination have slower conducted signals. As you raise the body temp they function even more slowly, even to the point of complete signal block. For example a numb, tingly limb becomes totally numb.

The infection itself triggers an exacerbation by ramping up the immune system which can happen almost immediately and continues to happen as long as the infection is active. It is the ramped up immune system that causes the relapse. Any process that stimulates the immune system can do this: infections, post-delivery of a baby when the priorly suppressed immune system gears back up, vaccinations, etc. Many vaccinations are still recommended, tho, because they are much less of a problem than the illness itself.

Yes, the early trigger of MS that I was speaking of would be like EBV causing mononucleosis. New study out on that. That may occur years before the first onset of MS and some researchers feel that it is this final act of making the immune system go wonky that initiates the process of MS. Remember 95% of the population or a little higher gets infected by EBV. Only a small minority actually get mono, the severe form of it (and probably an indication that the person's immune system is not handling the virus well). Also, it is not unusual for MS to "begin" with the first attack after an infection - any infection.

The topics I mentioned are not yet up in the Health Pages or the Index. I am still editing them. But, I will have them up soon and can have you link them. My only alternative is to post them here, but they would take alot of space. They are next on my list of topics to make "official."

Quix

I've talked to a lot of people who have had mononucleosis. One was my former boss who had mononucleosis at the same time I did (another employee was sick with it and she apparently transmitted it to me, my boss and I think one other person)


My former boss was diagnosed with MS in 2000 or 2001. I havent talked to the girl who apparently introduced mono into our workplace, or the other person who was sick with mono at the same time that my boss and I were.

One of the people I've talked to who had mononucleosis doesnt have MS (that I knew of) but she did tell me that after she recovered from the mono, she's never felt quite right since then. Something had obviously changed. I had the same observation with the mono that I had. Never felt quite the same after that.

But it is interesting that out of the four of us, my boss and I developed MS symptoms fairly quickly. I dont know when former boss started getting symptoms, but within 5yrs she was diagnosed. My symptoms started a year after the mono (had mono in January of 96, started to get vertigo problems in mid 97) I have no idea if the 2 other people I worked with have MS or not. Hope they dont, I wouldnt wish this on anyone.

When I found out that I probably had MS in 2006, I immediately thought of my former boss. How strange it is that we worked together for 8 years and we've both now got MS...

I do think that MS is caused by EBV, I just wonder sometimes if there's another environmental factor, or another virus that might not have been discovered yet that combines with mono to trigger the MS.

I read somewhere that shingles infections occurring around the same time as a EBV infection have been suspected as another trigger. Do you know of any connections with that, or have you read any studies about that?

This is a very interesting thread and it will help me understand my new brain MRI results. Lady_Express_44, I could not get this site to open properly:

.medterms.com/script/main/. I can't post the whole thing since I am so new.

Would you check it and let me know if there is another URL to access the information you were describing?

Thank you for listing all this information.

Yeah, I understood what you were getting at with that sentence, but it just reminded me about "normal" infections that we also go through while we have the disease.

I've always said to people, "manage a fever, and treat an infection, ASAP". I didn't completely understand why this was important (immune response, etc.) until recently, but I knew this caused relapses for me. In fact, I think I can trace all of my relapses (at least my spinal ones) back to a untreated or unknown infection, either from bacteria or viruses.

Even though it is not mainstream, my MS Specialist proposed Minocycline, 100 mg X 2 daily for me recently, because of the number of infections I've had in the last year. Unfortunately I am allergic to the Tetracycline family though :( . . . so I am researching other options right now.

I know that the MS Research Center here was doing some kind of study on the EBV virus a few years ago, as there was quite a bit of speculation about this being the underlying initial trigger. To the best of my knowledge, I've never had mono . . . but I've always been quite a trooper when I was sick anyway (well, at least before I discovered spinal lesions :p). Maybe it is a trigger for some of us, but perhaps there are more then one viruses or causes too. :cool:

Thanks again for the info.

I am interested in your newest articles, and would read them thoroughly even if they are long. :D

Cherie

Triggers fir MS.
 

The latest study was the best to put EBV (via mono) in line for the most likely infectious trigger. Others have been HHV-6, and chlamydia pneumoniae. But, by far the strongest evidence is for EBV. And certainly not everyone who gets mono will get MS. It seems that whole thing must happen with the proper background of genetic susceptibility, along with other factors.

The data is also huge for a genetic component, with dozens of genes playing a role. The Vitamin D (part of the lattitude stuff) is also gaining momentum. I will be writing a synopsis of the different causative stuff that have been implicated. So far no environmental toxins have held up when studied. So it looks like a combination of genetics, Vit D, and infections are working together over years to produce the right circumstances.

The northern lattitude thing is also huge. Canada has an amazingly high incidence of MS. In some provinces as high as 1 in 250. Even in Maine, it is put at 1 in 400. Whether the lattitude is the same as the Vitamin D, no one knows, yet. But genetics are big too. There are insulated ethnic/genetic groups that appear actually immune to MS, such as Gypsies, some Eskimo tribes and others.

If I were to work to get another article up on the Index, would people here rather see the "MS with Negative MRI" or the explanation of the McDonald Criteria?"

Quix

I'll try it again, and if it works, I'll correct the link above too:

http://www.neuropathologyweb.org/cha...apter6aMS.html

Thanks for letting me know!

Cherie

EDIT: OOPS, wrong link this time, I'll look again . . .