Fw: Trials needed

[Guest guest]

This is the reply I got from NARCOMS.

Dear Kathy,

Thank you for you for sharing your promising experience. You may want to visit www.clinicaltrials.gov to see what other patients have experienced while taking Naltrexone.

Thank you for your interest in NARCOMS. We invite you to take part in our study. There are two ways you can register, either at our secure website www.mscare.org or by mail. If you would like to register by mail please call 800-253-7884 or email your current mailing address and we will be happy to send you the enrollment form.

Purpose of NARCOMS

All the information provided by our members is entered into our registry's database. The purpose of the database is to facilitate multi-center research that will speed the development of new and improved therapies and enhance health care services for people with MS. The assembled data also offers insight into diagnosis, symptoms, treatment and course of disease. Also, each MSQR has a section updating the status of NARCOMS.

Please contact us if you have any further questions.

Sincerely,

Minard

NARCOMS Registry

narcoms@...Subject: Trials needed

I have SPMS. I am now 46. I took Betaseron for 3 going on 4 years with major progression. On Dec. 17 I started taking Naltrexone. I am enclosing my personal journal for you to review. I am now a real person again. I can take care of my house, family and even think again!

Went off Oxycontin December9,2003 I started taking Naltrexone at 25mg on December 17.

December 18 woke up feeling no pain, have more energy.

Dec.19 Still no pain I am not having a nap in the evening any more

December 20 I am feeling great Lots of energy.

December 21 This is fantastic no pain and lots of energy. My ON seems to be clearing up!

December22 Seen Dr. Hurst told him about the changes, he is impressed.

December 23 I am glad we are holding Christmas here this year I am doing so much better.

December 27 Christmas went well There were23 people here. I was great.

January2 My head seems to be buzzing It doesn't hurt it is just busy repairing itself.

Jan.5 My ON is 75% clear and still no pain!

Jan.10 MY ON is 99% clear. There is only a small blurry spot.

January 11 My head seems to be buzzing all the time now.

January 12 See Dr. Hurst again tell him my head is buzzing and all the improvements I have experienced My energy, no pain, ON clearing up, balance is better. Cut down to 4.5mg of Naltrexone.

January 13 found a compounding pharmacy and had my pills cut. 9 pills made100 capsules.

January14 I am still doing good my head buzzes a bit but not quite as bad as before. Told everyone who was at MS meeting about this drug. I am so happy I feel like dancing!

January 16 Things are going so good I haven't felt this good in over 5 years!!

February 6 Had a fever some of my symptoms coming back. ON blurry again some pain. Balance off. None as bad as originally.

February 13 ON clear again pain gone balance is back.

February 23 I went to the eye doctor today. He says the prescription for my glasses hasn't changed. My last eye glasses were purchased in 1998, pre-ON.

February 27 I had trouble going to sleep because my skin and head were tingling. I have more feeling in my hands and feet.

February29 I developed a cold. I run out of energy quick and get sore if I do too much. Overall I don't feel too bad just congested.

March 4 still congested and tired. MS is just fine. No troubles have come back!

March 15 I am going to drive Rob into work so I can have the car. I am not afraid to drive in the dawning light. I had quit driving because when I would yawn, I would stiffen up. All my muscles would go ridged. They don't do that any more!

March 24 Feeling good. I have an easier time getting up early to drive Rob to work.

March 26 I had a spasm in my right foot. It really hurt. I am glad it went away quick. I have the feeling back in my right foot and halfway in my left foot.

Mach 27 Had another spasm in my right foot. It went away quick. I use to get these spasms back in 1996. I am glad they go away.

March 29 I am feeling good.

April 1, 2004 I feel real good. I am doing things I haven't been able to do for over 5 years.

I hope this persuades you to do a badly needed drug trial so more doctors feel comfortable prescribing it to their patients. The only thing I feel bad about is not starting it sooner.