This Is MS Multiple Sclerosis Knowledge & Support Community

Hey y'all--

I have the first THREE mails out to study sites (Ohio). My state list is okay, as far as that goes, but not all these addresses are complete enough to include certain people (study coordinators). And sometimes even zip codes.

So... if you please, PM me the complete address of your own study site--and a name, if available, so we can get this ball rolling.

From snowy and blowy Cincinnati,
ME the Pain

Howdy, all—

Letters to all study sites but five are in the mail. I’ve tried Google and MSN Yellow Pages search engines and canNOT find detailed addresses for the following:

Research Nurse Specialists/Lafayette, Louisiana 70503

Winthrop University Hospital—Clinical Trials Unit/ Mineola, NY 11501

University Hospital and Medical Center Stony Brook New York/Stony Brook, NY 11794-8121

Neurology Consultants of the Carolinas, PA/Charlotte, North Carolina 28204

University of Pennsylvania/ Philadelphia, PA 19104

So if any of you have any info on these, PLEASE let me know so I can zip out a snail mail to them asap!

Good for you Jane!

I don't see anyone else giving you kudos, so I will.

I've talked with people at the NMSS about funding and will bring this up at the Public Policy Conference in March when we meet with our Legislators.

Is anyone else doing anything or are you just keeping quiet about it?

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Lyon wrote:Thanks Jane! I'll try to find some clues for those other locations on the internet also.

av8rgirl wrote:Is anyone else doing anything or are you just keeping quiet about it?

We need to do something but so far my wife and I are still discussing possible options.
Bob

I am headed to DC March 9-11 for a National MS Public Policy Conference and will definitely bring the issue up whenever I get the chance to any and everyone who has any pull with the pharma industry. Last year everyone knew I was involved with this clinical trial

This year I am sure they will be asking questions and I DON'T HAVE ANY ANSWERS!!

To top things off, last week I was dx'd with CRPS. I have been battling this shoulder pain since last November and they finally figured it out last week. Great...one more incurable disease....

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CRPS?

Lyon wrote:... I personally am trying to distance myself from the term and mindset of "autoimmune" and instead focus on the "inflammatory" aspect in the relationship of these diseases which have "suddenly" appeared in history in the "industrialized/developed" populations and remain rare/unheard of among the "undeveloped".

I don't know if you have an interest but it would be interesting for someone in your situation to go through "rebooting" which might be expected to eliminate any and all disease processes related to our becoming "developed".........if a person happened to lean towards those beliefs

It's an interesting theory, Bill, but with the exception of polio which DOES seem to have some bearing on societies becoming too "clean," there isn't a condition/disease that I know of that wasn't noted--if not accurately described, of course--in the vast record of medical history.

Only ten years ago, osteoporosis was deemed a condition exclusively limited to blue-eyed white women of northern European ancestry. Now we know it's a worldwide plague and nabs a lot of men in its insidious little net, too.

MS and its buds in the Gang of Four neural cluster (MS, lupus, myasthenia and Parkinson's) seem to be "the usual suspects" when it comes to assigning post-Industrializatrion blame. It's one thing for medical literature to write up the phenomenon being limited to the industrialized west... but I have to play Devil's Advocate and remind people that up until the last 20 years ago, India had only THREE CT scanners in the whole country. There are quite a few more now, of course, but MRI machines are even rarer--and with them, conclusive diagnoses.

Which begs the question: how many certain MS patients slipped under the radar and were either misdiagnosed with "something else" or ignored altogether. The very first (fired) neuro I met told me that prior to the MRI days, he would have considered me a "benign case" and that would have been the end of it.

There are consequences for living in the modern era, that's for sure. I think of the vast pool of those first X-ray techs working without any sort of protection at all and it's cringe-worthy. No telling how many of them were cancer casualties later in their lives.

But for them--and the miracle that X-ray technology gave us--we'd still be flying blind. Quite literally, in the medical sense of the word.

There's very little that's new under the sun. What is new is the ability to recognize it and with luck, do something about it.

Loobie wrote:CRPS?

Complex Regional Pain Syndrome. Similar to RSD. It affects the sympathetic nerve plexus. In my case, it has affected the nerve plexus in my right shoulder and upper arm. Due to the severe pain (neuropathic pain) I have acquired frozen shoulder b/c I am unable to move my arm.

I have successfully completed a series of 3 nerve block injections to calm down the pain and am now starting what I have been told will be about a year of PT to break the frozen shoulder. I am very right handed and this is in my right shoulder and arm.

av8rgirl wrote:

Loobie wrote:CRPS?

Complex Regional Pain Syndrome. Similar to RSD. It affects the sympathetic nerve plexus. In my case, it has affected the nerve plexus in my right shoulder and upper arm. Due to the severe pain (neuropathic pain) I have acquired frozen shoulder b/c I am unable to move my arm.

I have successfully completed a series of 3 nerve block injections to calm down the pain and am now starting what I have been told will be about a year of PT to break the frozen shoulder. I am very right handed and this is in my right shoulder and arm.

This is absolutely the last thing on earth you need right now, Cheryl, no doubt of it. When I first read about this, it sounded for the world like R.A. Then it didn't. I can understand why it's been soooo difficult to diagnos. Like MS, it seems that the symptoms vary from person to person.

Have the three shots helped at all?

JanethePain wrote:

av8rgirl wrote:

Loobie wrote:CRPS?

Complex Regional Pain Syndrome. Similar to RSD. It affects the sympathetic nerve plexus. In my case, it has affected the nerve plexus in my right shoulder and upper arm. Due to the severe pain (neuropathic pain) I have acquired frozen shoulder b/c I am unable to move my arm.

I have successfully completed a series of 3 nerve block injections to calm down the pain and am now starting what I have been told will be about a year of PT to break the frozen shoulder. I am very right handed and this is in my right shoulder and arm.

This is absolutely the last thing on earth you need right now, Cheryl, no doubt of it. When I first read about this, it sounded for the world like R.A. Then it didn't. I can understand why it's been soooo difficult to diagnos. Like MS, it seems that the symptoms vary from person to person.

Have the three shots helped at all?

Oh yes, the 3 shots have helped tremendously. The pain level went from outerspace to about 3-5. 3 weeks ago you could not even touch the right side of my body. Now it's tolerable.

I see the physiatrist in the morning to evaluate and regroup.

As for my thoughts on the other subject - sorry I am too tired to go back and post on the other thread....I do believe that the clinical trial doc who was treating me was one of the docs co sponsoring the trial and writing a paper. Incentive? Being published? I could be wrong...if I am, I apologize.

Also a question for all of you...who received compensation and when did you start receiving this compensation for trips to be treated? I've heard a couple of different versions.

As for me, I've never received one penny of compensation. I paid for all of my trips to the trial site - including air fare, hotels, rental cars, meals, etc. Trips began in Dec of '06 and ended in Oct of '08. That's a lot of trips. Phase IIb ended on April 1st 08 for me.

av8rgirl wrote: ... Oh yes, the 3 shots have helped tremendously. The pain level went from outerspace to about 3-5. 3 weeks ago you could not even touch the right side of my body. Now it's tolerable.

Glad you're better! A reprieve from the pain ought to get your creative juices going again and you can write the next chapter in MAKING THE OPEXA PEOPLE AN OFFER THEY CANNOT REFUSE. You know what I mean.

av8rgirl wrote:... Also a question for all of you...who received compensation and when did you start receiving this compensation for trips to be treated? I've heard a couple of different versions.

As for me, I've never received one penny of compensation. I paid for all of my trips to the trial site - including air fare, hotels, rental cars, meals, etc. Trips began in Dec of '06 and ended in Oct of '08. That's a lot of trips. Phase IIb ended on April 1st 08 for me.

I never got the first thin dime for my schlep up to Columbus, either. And that was the summer gasoline prices were through the roof--good thing I drive a CR-V and annoy other drivers with my 55 mph-dom. Made for super mileage in that awful time. I had every intention of charging the site for a hotel room "if" I'd had to cope with bad weather during my winter scheduling; thank God and Greyhound, I never had to deal with THAT problem.

Once again, there was no consistency in the protocol. Makes for very bad p.r., doesn't it?

The US(eless) Mail has, in the last week, returned three of my exciting little letters for wrong addresses. I'm not amused here, people.

Instead of going to the trouble of re-writing these letters and re-posting them, I did some googling a minute ago and came up with some names and addresses at Opexa itself:

Dawn McGuire, M.D. and Donna Rill
Opexa Pharmaceutical, Inc
835 Greens Pkwy
Houston, TX 77067
(281) 775-0600

I think they need to know what's going on with us. Crunching numbers and reviewing MRIs are fine per se, but if Opexa plans to get Tovaxin on the market, they're going to have to clean up their act and get some consistency in this protocol.

After I go to the dentist tomorrow (I think I've cracked an ancient filling), I'm going to get on this. I'm really tired of this waiting.

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Lyon wrote: I see that the people from Opexa have recently released a paper based on results from the earlier dosing study http://tinyurl.com/ckxoxa Bob

I think that was Tim's program... early on, he mentioned how there were only six peptides available for study when he started--but how VERY many more before our gang jumped on the bandwagon.

Also, this abstract answers one of our early-on questions: how did Tim, who was in a wheelchair prior to dosing, get a slot in a study? Well, here it is: that first group was more mobility-compromised than we were!

I'm now curious why this report is so late coming off the wire; Tim and his group completed their study months and months before ours was chopped off.