----- Original Message -----

From: M. Victoria Zilleruelo

To: Arachnoiditis@yahoogroups.com

Sent: Wednesday, March 01, 2006 1:27 PM

Subject: Re: [Arachnoiditis] Doctors??

I think it is HIGH time we make the whole world aware of what is happening with this disease and how much we all suffer endlessly without relief.  Every time I have a flare up I just don't want to wake up the next morning and it is no way to live, I am not suicidal, but, I can understand Alex and her desperation shows right through.  I firmly believe we all should write one letter and pass it around to sign it or endorse it or we can print the Arachnoiditis site contents and send to anyone we all agree on.  Something has to be done to get some relief!  I thought of Oprah since she has a good heart and seems to get things done!

----- Original Message ----
From: sgrabber <sgrabber@...>
To: Arachnoiditis@yahoogroups.com
Sent: Tuesday, February 28, 2006 7:05:56 PM
Subject: Re: [Arachnoiditis] Doctors??

If you think it would help, I'd be happy to write to Oprah, I'd appreciate everone's thoughts on what to say to her etc.  Sue

Also any ideas on the media - any ideas there? Talk shows?

----- Original Message -----

From: Mvictoria zilleruelo-Martin

To: Arachnoiditis@yahoogroups.com

Sent: Sunday, February 26, 2006 4:24 PM

Subject: Re: [Arachnoiditis] Doctors??

Great idea Sue, however, we would all be filtered as SPAM.  I think the MEDIA would be an appropriate avenue since they love senzationalism and scandals!  Anyone thought of Oprah?

----- Original Message ----
From: sgrabber <sgrabber@...>
To: Arachnoiditis@yahoogroups.com
Sent: Saturday, February 25, 2006 11:15:34 PM
Subject: Re: [Arachnoiditis] Doctors??

Could we write maybe 3 different e-mails and every send a different one every third day.  We may mention that since it is caused often by surgeons and doctors, it is not treated as it should be, etc. etc. And, if we all keep sending them ad nauseum, with our own name signed as well as one person in the group who could talk to them SHOULD they contact us maybe someone will get so tired of hearing from us they'll take action.  We all have to be of one mind to do this.  Three or four little e-mails a week won't work.  Sue

----- Original Message -----

From: TANKACY2@...

To: Arachnoiditis@yahoogroups.com

Sent: Saturday, February 25, 2006 10:59 PM

Subject: Re: [Arachnoiditis] Doctors??

Your on your own unless you can sweet talk your family doctor into believing your in pain. When my neuro surgeon that did my 4 back surgeries saw the arachnoiditis on the mri literally asked me to leave his office and said theres nothing he can do for me I was in shock. I had gone to this guy since 1986. I went to my family doctor took all the mri and xray reports  and told her if she didn't help me that I was going to commit suicide. Of course I'd never do that but it got the ball rolling and now I go there every 2 months and she refills my medications each time. Even though she didn't know anything about arachnoiditis I printed page after page of info and took it to her and asked if she would at least read up on it. She now treats me  and at least asks about any new symptoms and acts like she knows a little about it. If you do try to call for an appointment at a new neurologist don't even mention you have arachnoiditis because after explaining it to 8 different doctors while trying to get an appointment all I heard was either they aren't taking new patients or they don't know enough about it to treat it. If a neurologist doesn't know about it then they have been living under a rock and aren't keeping up with anything. Theres too much information out there that we all know so you can't tell me they are in the dark about it. Most of the info we read was written by a doctor so they are well aware of what it is. They are scared to get involved in anything that could have them involved in malpractice or a law suit. Even though they may not have been directly responsible for the cause they still don't want to touch anyone that has it because somewhere down the line they could get drug into it. My new plan is going to a doctor far away from my old doctor and im going in there as if im just having back pain and once im there then let them find everything out for themselves. If you've ever read the Burton reports they have added some things. The government of New Zealand is now recognizing arachnoiditis as a very serious disease and they are helping their people. They went as far as saying that anyone in their country in need of a myelogram, epidural injections, etc., are being told of the high risk of developing arach. They even mentioned how the United States and UK are still injecting things into peoples spines as if it just routine and not warning any patient about the risks. Even if they do warn you its nothing more than having you sign a paper saying you read all the big fancy words that the average patient doesn't even know or understand. If I tell anyone I have arachnoiditis they almost laugh and say what the heck is that? Its a funny name for a horrible disease. If you say you have cancer everyone goes "aww im so sorry". At least with cancer you either get better or die.  With this arah, you get it, no one treats it, it gets worse, you don't die from it you just have the same pain that cancer patient had but you get the honors of having it the rest of your life. If the government doesn't ease up on the restrictions they put on doctors for prescribing pain medications then we will suffer the rest of our lives. When a doctor is allowed to prescribe 4 pills a day for pain because thats all they are allowed to because they will be in trouble then we are all doomed with this stuff. If im legitimately in pain around the clock the I should be allowed to have medicine around the clock. So what if we get dependent or addicted. Its a life long disease with no cure so that means we need medication every day from now on.  So I am sitting here right now in pain because some idiot in the government said IM only allowed a certain amount of medication. Our government needs to wake up. I don't know how to go about getting it started but I am going to find out. ALL of us need to swamp the whitehouse with emails telling them we have a disease and doctors wont treat us. Theres what..over a hundred members here. Well if everyday all of us kept sending an email eventually they would have to get doctors involved. In 10 days we'd have over 1000 emails and just keep mulitplying eventually someone would have to hear us. Better yet start at a lesser scale, we can send them to the governor  but we all live in different states and the number of emails won't add up as well as if they were sent to the same place like the whitehouse. Short and sweet emails. Like , we have a disease, we are in pain , no one will help us and we can't believe you would allow this to go on in our country. Even if we all sent the same email. It would at least get someones attention and get them involved maybe. Then maybe doctors won't be so scared to even say the word..ARACHNOIDITIS!!!!