I am not leaving until I find out that I don't have scleroderma and LS is the least of my problems. Like you said it is a minor nuance although many that have it would disagree but my problems and symptoms are such that LS is the least of my concerns.

You yourself in all of your education and wisdom were just diagnosed yourself so Im suppose to get off the board now and not look for answers now that you have a definitive diagnosis? Sorry but it just doesnt work that way. Im staying and youll have to tolerate my discovery process but as I said I appreciate the discussion but until you can tell me exactly what causes scleroderma you dont have the answers I seek and you are not an MD.

By the way my sister died of pulmonary hypertension most likely caused by fenfluramine and phentermine a/k/a phen fen. And they told us it was heredity.

By the way do you work for a pharmaceutical company?

Gardener21 could you also tell us if you are working for a medical provider of any kind that is recruiting for a clinical trial?

Are you on these boards to recruit people? I don't mean to say that you don't have the disease but would like to know if you are recruiting people for a company you are working for or on their behalf?

I'm not saying it's wrong but I think people have a right to know and you did say you were in the medical field.

Julie, Julie, I never said you should leave the forum!

And no I have never worked for a pharmaceutical industry! Yet, frankly, they are our only hope for finding a cure for scleroderma, and getting it onto the market.

Despite being "only" an O.D and not an M.D. these days insurances recognize O.D.'s as primary health care doctors. I was also examined and certified in multiple states to use diagnostic and therapeutic drugs. Before that I was a biochemist at the Agricultural Research Service (part of the Dept. of Agriculture). I also have worked in the past both at NIH's National institute of Arthritis and Metabolic Diseases (old name) and the National Eye institute, where I was involved in research on the affects of autoimmune diseases on the eyes. In professional school (1979) I did my senior pathology paper on "The Affects of Lupus and it's Treatments on the Eyes," so I have had an active interest in autoimmune disease for a very, very long time. Lastly, I first actually had mild autoimmune symptoms starting in 1985, so I have spent 25 years trying to find out what was going on, with intensified research of the literature since things really flared up in 1997.

Yes, a couple times as a chemist I mixed up a slurry of silica and rolled it out on glass plates to make thin-layer chromatography plates. But I was aware that it could cause silicosis and took care not to inhale it. Anyway, in my case I think my father and his mother (the latter did not live in the state where I grew up) had this disease, and I know that my grandmother at least was NOT exposed to the same toxins I was. So in our family, at least, I think it's more genetic.

Having been in research I do know one thing about it: It travels painfully slowly, little step, by little step. The FDA tries to monitor things (and they're getting better at it) so that drugs have to go through certain stages of research to prove acceptable safety and effectivity. That slows down development of the drugs we so very much need, but it's surely a good thing. It also takes a hell of a lot of money: charitable contributions, federal grants for research, and investors. We haven't found cures for many cancers, or the common cold for example, because there are so many different mutations for these that it is a horribly complex thing to approach.

However, the new existence of gene sequencing and internet search engines are starting to speed things up noticeably. I am seeing new research articles dealing with my MGUS/myeloma and scleroderma, pretty much daily. It's extremely encouraging.

I am not saying that there aren't some very justified law suits out there against pharmaceutical industries! There are! However, there are also many people who jump on the bandwagon of class action law suits adding their frivolous or unwarranted claims. These actions can squeeze the life out of a company that might otherwise some day have given us the cure for scleroderma.

I am so sorry to hear of the loss of your sister. I know how heartbreaking it is to lose loved ones, for I lost my mother and dad withing 8 months of each other, sandwiched around 9-11. It was all very traumatic. And it is indeed scary for you to hear that pulmonary hypertension can be genetic. But did you say she took both fenfluramine and Fen-Phen? If that's the case you probably don't have to worry about it actually being genetic in your particular family. And it also explains why you are angry with the pharmaceutical industry. Incidentally fenfluramine and Fen-Phen were voluntarily taken off the market by their makers in 1997 at the request of FDA.

Julie, please tell us what signs or symptoms you have other than lichen sclerosis, and Hashimoto's that make you think you might have scleroderma. Perhaps we can help!

Julie, in answer to your last post, I quit working entirely at the end of 2000, mainly due to my health issues. I have never worked for anyone recruiting for a clinical trial. Nor have I ever been on any boards to recruit people. Again, I have never worked for any pharmaceutical industries in any way, shape or form.

And no, I am not lying about Dr. Virginia Steen's recent diagnosis of me.

I came to this forum to ask questions, learn, tell what I've learned, and answer as many of other peoples' questions as I can. Now that I have a definite diagnosis, my hope is to help others, and stay abreast of possible new therapies for scleroderma.

To clarify, when I worked in research at NIH. I was physically in the clinical building of NIH in bethesda working as a federal employee.

Thank you Gardener21 for your very respectful post, I appreciate that. GE and Bayer are not companies that are going to go out of business anytime soon so I doubt my little lawsuit will do harm to them. But when it comes out that the gadolinium is not being chelated out of our bodies the way it should and several million people come forward with their respective diseases I hope they are made to pay for all the damage they have done. As far as the NIH and the FDA plenty of corruption exists there. Not only has my research revealed this but Im a former investigator type with the DHHS/OIG and I have a friend that was knowingly poisoned by the CDC as a contractor by being sent into a moldy building, one of their buildings and there are many others like him. The GAO just did a report on that and Im happy to provide the link to that as well. I do not have rose colored glasses on when it comes to these organizations. They promote the expensive least effective treatments and suppress natural remedies and tests that would put some companies out of business, my opinion. By that I mean proteomics. The study of protein patterns in the blood where the technology can be used to diagnose and treat any disease but is being suppressed in my opinion by the FDA. Heres a link with Congressional Testimony that reveals in all its glory the power of corrupt government officials and how science is suppressed. http://www.correlogic.com/newsandevents/congressional.php. And, looking at this website I see that Ovacheck is now approved in Europe. Yep were on our way to becoming a third world country where science is suppressed so that the big guys can make a few more bucks.

I have to be careful what I reveal here because I don't want them to come after me. I have very little left to lose as I have spent tens of thousands of dollars trying to figure out what is wrong with me but the one symptom that has me very worried is difficulty swallowing and breathing. My neck is hard to the touch and Ive had this happen before and went to a neurologist that wanted to inject my neck with Botox. My legs feel very stiff and I have deep bone pain in my hips and calves. My legs and arms feel cold and dead and I now have the burning sensation as well although not all the time. At times I have crippling pain in my knees and other times I have shock like sensations that are no bigger than a bee sting in my feet and hands. I have severe muscle weakness in my arms as well as my legs but more in the legs. My head feels like it is going to explode.

Gotta go and read about Ovacheck. This is great news for Europe.

Julie,

Your web link for Corelogic. com did not work, but I think I did manage to find the testimony you were talking about.
I believe that the testimony you were talking about was a plea before the Montgomery County (Maryland) Council to allow a tax credit for people investing in their biotech firm. The full document is at
http://www.correlogic.com/pdfs/statement-EB-5-10.pdf (and I hope that it this link works!). In reading this, I see absolutely no criticism of the federal government except that they evidently feel
#1 that the hundreds of thousands (millions?) of small companies existing in the U.S. should all have been included in the bailout, a thing which surely would have bankrupted us all, and
#2. Mention that it takes a very long time to go through the FDA approval process. Yes, I know that, and it's for our safety. You don't think that it's good that the FDA has tightened its oversight since Fen-Phen?

There was absolutely no testimony here regarding corrupt federal government officials! None!

Please, if this is not the article you were talking about, then guide us to the correct one. But I've looked pretty carefully even through their archived "News and Events" and this was all I could find.

Julie, have you ever had a positive ANA test? And if positive has the ENA panel been ordered? Has an anticentromere B test been ordered? Most importantly has anyone put a drop of oil on your nail cuticles and examined them with an ophthalmoscope, otoscope, or capillaroscope?

You went to the wrong place. Try this link or search under Congressional Testimony

Congressional Hearings: NIH Ethics Concerns: Consulting Arrangements and Outside Awards

http://www.correlogic.com/newsandevents/congressional.php

I just checked it and it worked. Basically what a few of the doctors did was once they found out how powerful this technology was they left the NIH to work for a competitor of Correlogic. I don't want to go into detail but eventually the FDA decided to regulate Ovacheck as a medical device which in turn set this technology back about a decade.

But the test is available in Japan and now Europe so those that want it will be able to get it. Me I don't care if I live or die anymore I am so sick but I'm not depressed just tired of living like this.

I'm buried in medical records and have just completed the radiology file. My next step is the labs file.

I've been tested a lot so I'll look for those tests. What I'd like to know is if there is constriction in my neck am I at risk right now for stroke?

I'm really concerned about that.

I really couldn't get the link to work, and still can't but anyway, thanks for sending it again. Your second link did work, and Thanks for that! I have not had time to read the entire transcript, but will do so. So far I have read much of it.

Yes, unfortunately there have been a very few individuals who have apparently been guilty of extreme and outrageous conflict of interest by holding consulting jobs at NIH concurrently with holding jobs of responsibility at government agencies. It's regrettable, and gives the entire system a bad name. But having been at NIH, SSA, and ARS (part of FDA) myself, I can tell you that the huge majority of people working there are hard working employees dedicated to helping the people of the U.S. To say that the entire system is corrupt I believe is wrong. I worked my ass off as the "blind" half of double-blind research and I don't appreciate the accusation that everyone is corrupt there.

As for the Ovacheck, well it IS a medical device! So why should it be exempt from the same hoops that all other medical devices have to jump through in order to be approved? Suppose a device is not as accurate as the makers claimed, giving false positives or false negatives. What havoc that would reap for patients. I think all medical devices should have to prove they accurately do what the makers claim!