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-   -   Lesions vs symptoms (https://www.neurotalk.org/multiple-sclerosis/44117-lesions-vs-symptoms.html)

Quixotic1 05-15-2008 06:47 PM

Quote:

Originally Posted by lady_express_44 (Post 279914)
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


The Shingles virus (Herpes zoster) has been looked at extensively and the data is not great that it is a major trigger. But, MS as a disease is so varied that most researchers believe that any one of several neurotropic viruses (viruses that remain in your nervous system forever) like herpes can play a role, just as there is evidence for many different genes. EBV is a member of the herpes family of viruses.

However, recurrence of herpes infections, Shingles, HSV I, and HSV II can all induce a relapse lickety-split

BTW - the Minocycline (doxycycline) has been studied for its antiinflammatory effect in MS and on lesions. It has a surprising suppressive effect on the development of new lesions and reducing relapses. The study that showed this was very good, but was short. So your doc was probably attempting to do both things, slow your disease and prevent bacterial infections.

The same thing has been shown for statins (specifically Lipitor) and recently for Prozac. It's all very interesting, and I'm not sure anyone really knows what it means yet.

Quix

lady_express_44 05-15-2008 06:57 PM

Quote:

Originally Posted by Quixotic1 (Post 279922)
However, recurrence of herpes infections, Shingles, HSV I, and HSV II can all induce a relapse lickety-split

BTW - the Minocycline (doxycycline) has been studied for its antiinflammatory effect in MS and on lesions. It has a surprising suppressive effect on the development of new lesions and reducing relapses. The study that showed this was very good, but was short. So your doc was probably attempting to do both things, slow your disease and prevent bacterial infections.


I have had Herpes simplex (that's the oral one, right?) since I was very, very young. It used to be that virtually the entire bottom 1/2 of my face was covered in blisters, several times a year.

About the time the MS became obvious (in 1991, but I had some symptoms before then), I STOPPED getting oral herpes. For whatever reason, even when they start to crop up, my body fights them off and they never erupt any more. Bizarre!

I would be inclined to believe this is part of the equation for me.

I wish I could try the Minocycline, because I suspect it could be helpful for me. Do you know if there is any other drug that MIGHT have the same effect, but that is not in the Tetracycline family ... (even if it is not tested for MS yet)? I have virtually lived on Penicillan and other antibiotics this last year anyway. :rolleyes:

Feel free to drop by and chat any time you are feeling good enough. :D How's the attack going, BTW?

Cherie

lady_express_44 05-15-2008 07:03 PM

Quote:

Originally Posted by starfish (Post 279908)
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.


Even after I fixed it, it seems it was wrong. :rolleyes: In case you don't notice my latest edit, I thought I'd point it out again in this new posting. Hope it works this time . . . it is very good information:

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

Cherie

Natalie8 05-15-2008 07:07 PM

Quote:

Originally Posted by Quixotic1 (Post 279915)
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. Quix

I'm another person who had mono and then got MS shortly afterward. I'm thoroughly convinced the mono triggered it all. I got mono in Jan. 2007 when I was 39 years old and had it for about 9 months. (I'm sure I got it from one of my students). It may have lasted longer since I was older?? Then it morphed into tonsillitis somewhat helped by antibiotics. Had a tonsillectomy in Jan. 2008 and felt pretty good afterward until the MS kicked in during July 2008. So literally a year and a half after I contracted the mono I got the first attack of MS. I also had a severe vitamin D deficiency. And my mother was diagnosed with PPMS 2 weeks BEFORE I was. So I am assuming I had the genetic thing going on, the lack of Vitamin D and then the big punch by EBV to get the whole thing going. Just a confluence of bad luck I guess. I've been taking 2,000 mg. of vitamin D a day. I still ask myself what if I hadn't gotten sick with mono? Would the MS have not kicked in?? :(

lady_express_44 05-15-2008 07:16 PM

Quote:

Originally Posted by Quixotic1 (Post 279915)
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


BTW, if you decide to get into the vitamin D theory in any detail, I have a link you may be interested in considering.

Personally, I'd enjoy the McDonald Criteria article first . . . but then I'm biased. :D

Cherie

Erin524 05-16-2008 01:05 AM

The Vitamin D theory is an interesting one for me.

For some reason, my parents didnt buy fresh milk for me and my sister when we were younger. They made dehydrated milk instead...and I live in Nebraska, where you cant hardly drive anywhere without running into a cow somewhere. (Mmmm! Steak!)

Just before the mono knocked me on my back for about 6 months, I had shingles. I didnt recognize it as shingles at the time, but only realized what it was when I was talking online with someone who had shingles and decided to look it up to see what exactly it was. Description fit perfectly.

I think my family might have the gene for MS in our DNA soup somewhere. My dad has a 1st cousin whose daughter has MS. She had her first MS exacerbation the week that her brother became a quadrapeligic after he dived into a lake headfirst and broke his neck. Their mom had two paralyzed children in the hospital at the same time. (same hospital too) Of course, her brother didnt get his ability to move back, but she did. I havent talked to her yet (no recent family get-togethers) Hopefully I'll get a chance to someday.

It makes me wonder if we're going to be the only two in the family tree to get it. I kind of wonder which of my other relatives might end up with it.

Is there any information on an average number of how many people in one family have MS?

hollym 05-16-2008 08:03 AM

I can't even say enough how fascinating this all is for me. When I first got sick, I was a research fiend, but over the last couple of years I have lost my passion for research - probably due to my frustration in dealing with doctors who don't keep up on the latest research.

I truly believe in the infection as a trigger. In January of 2004, I was so sick with the flu that I probably should have been in the hospital. I couldn't even get a breath without doing a breathing treatment. It took about a month to get over this. Looking back, it was probably bronchitis or pneumonia, but I was too stubborn to agree to really get checked out. I just figured it was the flu virus and I decided to wait it out because antibiotics wouldn't have helped.

As fate would have it, no more than about 3 - 4 months after I recovered from that was when I started having the big flare that pushed me into the world of MS diagnostics.

To answer Q's question about which article I would most like to see, I'm actually really curious about both and I can't decide. The MacDonald Criteria has often interested me because I was always of the opinion that itis more suitable for clinical trials and research studies and less for diagnostic purposes. I still think this is a clinical dx and I think many people are excluded because they don't fit into the tight criteria. It is one thing to exclude people from a study because they don't fit, but when you are talking about restricting access to drugs that can slow progression of the disease is just sad.

Of course, I'm also interested in the one on lack of lesions because my official dx has been held up because I don't have those "typical" lesions. I often wonder whether I have had more typical lesions in the past, but that they have come and gone and just the less typical ones remain.

One radiologist described my MRI as subcortical white matter disease and listed differential dx's as MS with less likely considerations of lyme and small vessel disease. Another radiologist said that my lesions are seen in people with MS and mentioned something about clinical correlation. To me, it seems like he was saying it looked like MS and that the neuro should see if it fit clinically, too. However, once you get back to the neuro, they get hung up on other things.

My first neuro was actually shocked about how relatively good my MRI looked. He said he thought I would be loaded with MS plaques in both the brain and C-Spine based on my neuro exam. Comments like that make me interested in Q's comment about each sign in the neuro exam representing a lesion. I assume this is part of how you can have MS with a negative MRI.

Well, I've rambled on enough for now! It's funny but I haven't really talked about any of this for years, but this thread certainly drew me out.

lady_express_44 05-16-2008 01:54 PM

QUIX forwarded me the unedited version of the "HOW CAN YOU HAVE MS AND HAVE A NEGATIVE MRI" write-up, but for some reason it doesn't want to copy and paste here properly for me. Here is the link though:

http://www.medhelp.org/posts/show/471761

Cherie

Quixotic1 05-16-2008 10:00 PM

Thanks, Cherie.

I got the article mostly edited and placed on the Main Health Page. It's not in the Index (outline) yet.

See if this reads better. This is the article on the many different ways you can have a negative MRI and still have MS.

http://www.medhelp.org/health_pages/...how/161?cid=36

For Anone who is interested here is the link to the Main Health Page. I wrote the majority of these:

http://www.medhelp.org/health_pages/...is/list?cid=36

Talk to you later. Remember, these were written to be clearer descriptions of difficult topics, not as scientific references.

Quix

Nancy T 05-17-2008 12:44 AM

Quote:

Originally Posted by hollym (Post 279664)
That neuro in Ohio really destroyed my self confidence. He basically down played all of my sx and signs and told me I was too worried about these problems and to suck it up and deal with it - essentially move on with my life becasue there were no answers for me. He actually told me to take my sx meds, get a good therapist and forget about this.


Telling people they are "too worried"--THIS is the crux of the problem!!

OK, I can see that a neurologist could reasonably tell a person (after appropriate investigations and follow-up) that they were not likely to get diagnosed, and that the best thing to do is take symptomatic medications and forget about getting diagnosed (depending on the severity and progression of the symptoms, of course) and get on with your life.

I actually had an internist early on tell me "sometimes these things are never diagnosed," and I just looked at him funny, but darned if he didn't turn out to be right. I wish a NEUROLOGIST would have had the courage to say that to me STRAIGHT OUT.

I would not have a problem with a doctor saying that IF AND ONLY IF they could reasonably, calmly justify that to me, instead of rushing to that conclusion immediately.

But they have NO RIGHT to judgmentally tell you that you're "too worried" about it. That is what my doctors did, and it burned me up, and made me depressed, REALLY depressed, because I was being told that my reaction to the symptoms was more of a problem than the symptoms themselves.

WRONG!! The real problem was my reaction to the DOCTORS' reaction to my symptoms, which was to imply that they were CAUSED by me "paying too much attention" to them.

Essentially they are telling us to PRETEND our symptoms don't exist, or that they are nothing abnormal, when we know DARN WELL they are.

I don't mind acknowledging that I am unlikely to get a diagnosis. I don't mind being settled in the long-term treatment of (mild) symptoms without pursuing diagnosis. But it all needs to be acknowledged and out in the open--able to be discussed among intelligent adults, instead of a doctor sweeping it all under the rug with a dismissive "you're just paying too much attention to your symptoms [you poor anxious little woman]."

I bet the doctors wouldn't be so quick to give up on a diagnosis if it were their sister or spouse having these symptoms.

It's impossible to talk to doctors. :mad: That's why I stopped.

Nancy T.


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