This Is MS Multiple Sclerosis Knowledge & Support Community

HarryZ wrote:BTW, you wrote a great message.

Thank you.

HarryZ wrote:You have no idea how accurate you are on this comment.

I might have a little bit ............. I've been to other message boards. I hang out at 3 right now.
Ken

Since I am a new diagnosis and not currently in a "flare" period, as far as new brain inflammation present currently, my Dr. has decided to do the "wait and see" thing. If I experience NEW symptoms, I am to go in and we will discuss new treatment.
For now, he has put me on Calcium/Vitamin D, Magnesium and B Complex Supplements and increased my Zanaflex to a high daily dose.

I had the flu nearly 2 weeks ago and have had daily migraines again since as well as lots of leg spasms and pain, etc...
I've noticed the last few years, each time I do get a bug, It takes weeks for me to get back to normal. Must be a connection.
Kimrenee

I've been to other message boards.

Ken,
I have looked at other sites. I tend to come away with a strange desire to wear light-up jewelry, put a pink flamingo in the front yard, and hang fuzzy dice from my rearview mirror.
Is that bad?
Terry

Terry wrote:Is that bad?

No Terry not at all. Actually, I think that the beneficial effect of lawn ornaments were covered in a research paper somewhere. If I remember correctly there was a reduction in inflammation over placebo (don't ask me to remember what the placebo was). I've never seen anything on dice or jewelry.

Ken

Bravo <----applauding
Entertaining thread, everything but the kitchen sink....drama & debates.
I am actually impressed at the run of emotions, although I don't like to see people disagree; it emphasizes how individual we are.

By the way I am not taking CRAB drugs or other DMT's. I think I would rather shoot myself in the foot and live with a visible wound.

When personally evaluating the "to take or not to take" issue, I had faith in the neuro's recommendations. I did a little research myself but it was overwhelming to say the least. Ultimately, it didn't work out.

On this day, I firmly believe there will be no progress with treatment because thousands of us are being grouped into one. We are ALL different, our lesions are different, our lifestyles, our genders, our genetics.
Please correct me, but where are the individual studies?

For example, I couldn't care less about a study of 150 people taking copaxone by whoever....their motivation is purely financial gain and we would be idiotic for not assuming this. The companies are like siblings squabbling, competing and trying to bring home the best report card. I'm so sick of it, it turns me running in the opposite direction. Maybe I'll run right into a bee hive and be better for it.

WHAT I WANT TO KNOW......Are studies done on individuals, a group with very similar lesions, same gender, similar backgrounds/stress factors, etc.
Compare them and what are the findings? Does this make sense or am I losing it completely? Would this be impossible? We are all different, but on a national scale, I must be comparable to at least 20 other people in this world.

It would be nice to have a database to input certain data that could be matched to another ms'er. They could try one thing and I the other....a quicker way to play guinea pig.

Anyway, happy to read independent minds, whether I agree or not, at least y'all have an opinion.

Be well.

WHAT I WANT TO KNOW......Are studies done on individuals, a group with very similar lesions, same gender, similar backgrounds/stress factors, etc. Compare them and what are the findings? Does this make sense or am I losing it completely? Would this be impossible? We are all different, but on a national scale, I must be comparable to at least 20 other people in this world.

I have never seen a random group of that kind of detail in any MS drug trial. I doubt any pharmaceutical company would be interested in doing a trial like that because regardless of what results would be obtained, the resulting targeted market would not come anywhere near at making them the revenue they would want. In other words, a trial of this nature would only be done to possibly benefit the health of the small group and we know that drug companies simply don't do that.

Harry

Miss_Feisty wrote:Bravo
It would be nice to have a database to input certain data that could be matched to another ms'er. They could try one thing and I the other....a quicker way to play guinea pig.

That's kind of what we have going here...although not officially. Read and use the search function for the threads that interest you, see what people are saying about drugs, supplements, diets, exercise, etc. There's more info and shared experiences on here than any other MS site I've looked at online.

Sometimes doctors will come across success w/a drug for a specific demographic by mistake...like this study on Copaxone. Men with PPMS seemed to do well on the drug. But the study wasn't looking for that.
http://www.thisisms.com/article102.html
Harry's right..there's no $ in targeting a drug for a limited group of MSers.

AC

Feisty:

I hear what you are saying. It annoys when I'm discussing my situation with someone, and I'm told "well my friend's sister's cousin had MS, and she is doing fine." No mention of what "fine" means, or acknowledgement of how varied this disease is (if it is one disease).

Anyways, there is at least one study along the lines of what you're talking about:

http://www.clinicaltrials.gov/ct2/show/ ... rank=3[url][/url]

Feisty,

your post has been on my theoretical 'to do' list for weeks...it's the only way out of the maze me thinks....we have to brain storm the most efficient way to enter the data...cheers example is alarming....how many PPMS's out there could use copaxone (i haven't read the link yet) i feel like so much info on MS has already been discovered but it just gets filed in the cold case files....recently watching American Justice...the green river serial killer....they had the right guy after the fist victim was found, the case work was shoddy and it took a guy years later to go through the info and make sense of it...i read on tims somewhere i think about a doctor doing the same thing with some MS info/but then he had to take another job and focus on that....so...i think it's up to us to do this...these threads are great...but they to turn into cold cases/or off topic/and stuff gets filed inefficiently....so why not start a thread discussing how best to organize? I forget which one here is the accountant?

jack

Cojack wrote: I forget which one here is the accountant?

jack

Ha! Ken (notasperfectasyou) is the accountant. He is incredibly organized, and is caretaker for his wife, Kim. Search his threads as author, and you can learn about their journey. Kim is improving on antibiotics.

The problem is, in my limited time here, Jack- people find something that works for them (hormones, LDN, supplements, antibiotics, campath) and go hang out on that thread. Then the general thread is used for new stuff. MS therapy seems to be trial and error (or trial and remission/progression.) Threads go cold when people have moved on.

The search function is the best thing we have going here.... it seems there are as many paths to stability as there are MS patients. I could "sell" you on mine, but it has to work for you, or else why bother? (That's why many of us got excited about CCVI, because it was in 100% of MS patients tested.)
AC

me? organized? I am an accountant, but I have the organizational appearance of Andy Ronney. Thank you Cheerleader for the compliment. I appreciate it.

Jack, I know what you mean. I have more paper piled on my desk about MS than I do actual work (don't tell my boss). Before I found ABX, I had folders for eahc different kind of cytokine, therapy, white blood cell, etc. Then I have a huge stack called "Looked important, but did not understand - SAVE"

But what you're really talking about is being bombarded with information and topics and "want too's" that conflict with the fact that only lawyers know how to work more than 24 hours in a day (anyone remember Tom in The Firm?)

For me, I have to put somekind of reasonable limit on what I can be interested in. I recently sent Marie a PM that said that I'm real interested in the Vascular stuff, but I just don't have time to read up on it. I'm very focused on ABX now and I don't know what Campath does or LDN. I want to know, but I have to make choices. I wish I was a better friend here and I wish I replied to many more posts, but I don't have time. The desire is there to know everyone here much better. I have to fuction within limits. I think non-accountants call this "compartmentalization". Ken

Ken,

I didn't mean to toss the burden on your lap! it can be more of a collective effort....cheer i think your regimen is great...as far as working for me/don't know yet/i didn't/i don't think i present symptoms like Jeff did...(i read all your stuff by the way) i'm hip to the vein stuff/thought i had the opposite problem til i read the line about veins being stretched by dilation prior to dysfunction...Bikram yoga used to keep me up at night...i digress to another thread...

jack

I have so much to say I don't know where to start here.

First Ken, remember GAAP, in a strangely odd way the accounting principles can be applied to ms. It is a science of tracking and reporting and just like any other science there is a methodology behind it. I have a background with accounting and I can understand your points. Especially where people expect you to know "ALL" about income tax during the season. haha
I think the fact that your input into a project would be appreciated rather than thinking people would expect you to lead it. You can breath now.

We all have a specialization in life, working or not. Some are good with words, some with numbers and Jane Doe a housekeeper may be the best organizer in the world. All of our minds are gathered here.

Cheerleader, you are right this is a place where we can play guinea pig together and it is a blessing to have. It is a primitive and unorganized resource, especially when you don't know where to start. The search function is great, but is there a better way?

Cojack....yes the key term is data. There are many ways to organize any type of data ranging from your grocery list to sleep patterns etc.

My point on this is to have a database showing an anonymous individual....let's say:
#42, gender, lesions, active/nonactive lifestyle, ms in family, other previous illnesses, financial burden high or low, personality type....etc.
There are several items to include, but I have seen nothing along this avenue so far. There are databases for dating, dna markers etc. Why not ms'ers? The only problem I can see is confidentiality, how would this be protected?

Again, as Cheer said, we are doing this in a way here and now. The problem is I would feel uncomfortable asking some of the questions that anonymous data could include. So that tells me, the social aspect is of more importance. I see friendships develop, so who wants to discuss such private matters even when hidden behind a false name. The name is false but the feelings and people are real.

Patientx.....the infamous "I know an ms'er" syndrome. YES I heard all about that person who is doing FINE, who is she anyway? It is like nails down a chalkboard, but it is the other person's way of saying...I want you to be okay too. When I hear this, I always say.....but that person is not me and it halts further mention of "the fine one".
I will check the link you sent shortly.

And Harryz.....money money hunny. Even if Trump had ms would there be enough money to do a real study? Probably not. Everyone wants to be paid. With labs, chemicals, rats, heating bills.....who can afford to do things for free? I can, I can provide what I know about myself or pay a small fee to someone willing to provide what I am looking for. Here again, the monetary intention of a person holding that type of data should be evaluated. What I am looking for may never come about.

Ideas for reorganizing this site would be very helpful, especially for newcomers whose heads are spinning. I am thankful to be here and to have an opportunity to listen.

Be well.

Miss Fiesty,

nice post. Thank you for your understanding. OMG, you know what GAAP is!

A log of patients is interesting, but maybe not as easy as ..... we share a lot here, but we also don't. Idunno. But, you ought to look at what Accelerated Cure Project is doing - same idea very large scale.

How did you find your way to TIMS?

Ken

And Harryz.....money money hunny. Even if Trump had ms would there be enough money to do a real study? Probably not. Everyone wants to be paid. With labs, chemicals, rats, heating bills.....who can afford to do things for free?

Those kinds of costs for the study you would like to see could be covered relatively easily but THE problem here is the revenue return that any big pharma expects to get back in the long run. I, more than most people, know the huge variation of disease that MS patients endure since I have followed MS research for decades. And a study of the type that you would like to see makes sense from a health perspective point of view.Unfortunately, that is not in the cards for big pharma.

Harry