Come back Deb all is forgiven

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Come back Deb all is forgiven

Postby raven » Sun Jan 08, 2006 3:31 am

This forum used to be a very good place to visit and objectively discuss current MS research. Unfortunately that is no longer the case.

These days each news item is used to either complain at the lack of progress in finding a cure for MS or to promote the ABX regimen. I'm happy for those that are following the regimen and are getting good results but there are others getting good results from different treatments and also those who are following the ABX regimen who are getting no benefit.

I'm afraid that constructive discussion has gone out of the window and I for one mourn its passing.

Like Deb it's time I departed.

Robin.
Do not go gentle into that good night. Rage, rage against the dying of the light.
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Postby CureOrBust » Sun Jan 08, 2006 4:21 am

this site will become one sided if all those that disent, leave.

Please stay.
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Postby bromley » Sun Jan 08, 2006 4:48 am

Apologies Robin - I think I'm guilty of being one of the biggest complainers. I'll cut out my complaining. I'd be grateful if you would stay on board as someone who has personal experience of Campath and someome with your own views on this disease.


Ian
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Postby OddDuck » Sun Jan 08, 2006 6:17 am

Hey there, Robin. You always did have impeccable timing. How did you know I'd be popping on here this morning as luck would have it?

Just yesterday I was thinking the same thing as you and was almost going to post, but then didn't. I saw you had posted a few times and was about to do the same. As is also your norm, you had already said what I would have said anyway. :wink:

I'm still involved in MS. As a matter of fact, aside from already having one co-worker who was diagnosed with MS back in 2004, another co-worker friend of mine has also just been diagnosed over these past holidays!

I am still in contact with the NMSS and chatted with Vanderbilt for a while (a few months) regarding MS, their theories, research, etc.

The latest incidence for me being: ta da! They are finally finding what I kept spouting over a year ago! The fact that Keppra (levetiracetam), due to the fact that it is a nootropic, and is neuroprotective, etc. does improve cognition (not to mention tremor). Of course, you know me...............I said "Doggone it, guys! I TOLD you so!!!" :D

The NMSS wrote to me and told me they were glad to see I was still busy with all this.

Robin...........by the way..........it's GREAT to hear you are still doing so well, also!

If anybody is interested, I'll post the most recent findings with regard to levetiracetam in another thread. I still keep hounding the same folks in the research world to continue to study desipramine and levetiracetam. Vanderbilt itself does have a clinical trial starting up now on levetiracetam. At least they know I'm not totally out of my mind now, and they do listen and talk to me. That's a small step, I suppose.

Deb
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Postby bromley » Sun Jan 08, 2006 7:22 am

Deb,

Hope you are doing well and good to see that some are taking forward some of your suggestions.

I was interested to learn that two of your co-workers have been recently (ish) diagnosed with MS. Are you talking about a huge number of staff in your workplace? I recently started a thread on how this disease might be triggered and noted that a colleague I shared a room with from 2000-02 (three of us in the room) had been dx in 2005 (a year after me). A number of others posted similar experiences e.g. cases among college mates, in neighbourhoods etc. This to me would certainly point to an infectious cause / trigger (unless it's something in the water).

I also think that MS cases are probably understated at present. In the UK some 85,000 people are thought to have MS (about 1 in 700). However, one neuro I met thought that it could be as much as 50% higher than this.

Keep up your research.

All the best

Ian
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Postby OddDuck » Sun Jan 08, 2006 7:29 am

Hi, Ian!

No..........it wouldn't have anything to do with proximity in the workplace.

It takes many years for MS to make itself evident clinically. By the time someone is diagnosed with it, that person has probably already had it for at least 10 years or more. What they call "early MS" isn't really the fact that a person hasn't had it for very many years, it relates more to the fact that its clinical "presentation" (that can be measured or detected by current testing methodologies) and/or the current neurological damage that one is suffering is "early"..........that's all.

I have only known and worked with these two ladies for the past 7 years.

The only coincidental factor between us (I still do have neurological problems, of course - even if it isn't MS), is the fact that all three of us come from the north - i.e. the northern states of the United States. Research has shown time and again how MS is much more prevalent in people born and raised in the northern states of the U.S.

I'm not saying MS might not have an infectious cause of some sort. Who knows? It just doesn't happen that fast.

Deb
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Postby OddDuck » Sun Jan 08, 2006 7:33 am

Oh! And speaking of "water", didn't Wesley and I speculate and hold a conversation with regard to that (and the military) etc. some time ago?? :lol:

Sounds strange, but then again............!!

Deb
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Postby Melody » Sun Jan 08, 2006 7:35 am

I think we need to agree that all of us appear to have different origins of disease onset as well as the actual path progression takes. If we agree to that then different methods will have different results. I feel I'm as open minded as I can be under the circumstances and yes I'm for Natural Approaches: diet included. I also felt no disloyalty in asking Sarah to help a friend out that is not able to change her diet as she is not the cook nor the shopper nor does she have that type of support available at home. Her husband is beat most days he has four kids as well as her care plus his job on his plate. There is not need to leave we need all treatment plans represented. You just might be the one that helps the one person who needs it most. We should try to take things a little less personal and realize most of it stems from frustration, anger as well as fear. I'm frightened tooooo although I stay positive for John as he doesn't need to feel like he's on a Merry-Go-Round ride from HELL. He has a life to live and all we can do at this time is try to make it the best possible life that is attainable to him. Lets open our minds and realize we all suffer together no one is alone here. Keep posting I for one like to have a holistic view of all treatments available. Granted some are more radical than other's but some progression merits that type of approach. I'd swing quick if I felt John was on the decline I would not let Pride get in even a day. This disease changes quick one day all is fine and the next it is NOT. We must learn to be more versatile in our approaches and roll with the punches so to speak. Just my opinion not LAW.
Last edited by Melody on Sun Jan 08, 2006 10:38 am, edited 1 time in total.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby HarryZ » Sun Jan 08, 2006 9:52 am

Ian,

I think I'm guilty of being one of the biggest complainers. I'll cut out my complaining.


One person's "complaint" is another person's statement of fact on a situation. I find nothing wrong with the comments and frustration that you express on the situation of MS research and the disease in general.

Many people who post on this forum have different opinions and points of view. In general, most of the people are very polite and express their disagreement in the same manner. And that's what makes this forum interesting to read and participate in. There is nothing wrong in disagreeing with someone else as long as long as the conversation doesn't personally attack a person because of that point of view.

So Ian...continue to be Ian :)

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Re: Come back Deb all is forgiven

Postby NHE » Sun Jan 08, 2006 4:23 pm

OddDuck wrote:Oh! And speaking of "water", didn't Wesley and I speculate and hold a conversation with regard to that (and the military) etc. some time ago??

I don’t know about the US military, but I watched a show a while back on PBS which addressed the former Soviet Union and their weapons programs. The PBS documentary discussed how the former Soviet Union was developing biological weapons. One of these was an infectious bacterium which was genetically engineered to produce a protein found in human myelin. By exposing animals to this bacterium, they were able to produce an MS/EAE like disease in the animal.

I will post a link to the documentary if I can find one on PBS’s site.

NHE
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