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| | René and her Story part1
I'm finally going to be using the Mitoxantrone treatment that I've been
talking and writing about for over two years! It has taken me two years this month,(September 1997), to get a doctor to finally listen to me. NO ONE in the Professional Arena would lift a figure,show any interest what so ever, until Dr. Catherine Forest, my GP!
A newspaper article from the Orlando Sentinel,Florida, 9/14/95 was sent to me two years ago. Talking about a study from Patras University,Greece by 2 Doctors.Dr. Kountouris(Greece) and Dr. Kornhuber,(Germany) saying they used 320 patients in the "Final stages"of MS.Giving them mitoxantrone and immonoglobins in small doses to minimize side-effects,over an 18 month... 58% showed remarkable improvement... 40% showed some improvement and 2%
showed no improvement. Dr. Kountouris said "52 of the patients seemed completely cured"!
My MS is chronic progressive, I have approximately 10% usage of my body, I would be classified as being in the "Final Stages".10% usage of my body means, I can't pet my cat that lays on my lap, scatch my eyebrow, brush hair from my eye,feed myself, take care of my hygiene,sit up without support or touch someone. This article was and is too promising for me to ignore.
I started my search for information on the Research, ...EVERYWHERE! I had no idea of the "Professionals" that wouldn't help. I made copies of the Article...dozens of them, bought stamps and stationary and began sending a cover letter along with the newspaper article to News Stations everywhere, 60 Minutes, Dateline, 20/20, Primetime Live, Time Magazine, All the Tabloid Shows, Talk Shows,even the National Enquirer.They either didn't answer my letter or they sent me their standard postcard...basically saying, thanks but no thanks but please do keep watching or reading our stuff!! Most didn't answer.
After about 4 months and not getting any information from anyone, INCLUDING my neurologist, Dr. J.P.Novic.(who's supposed to be PRACTICING medicine) I wrote Senator Barbara Boxer of California, it took 3 letters, the last one got through to her.
Jack Kervorkian had just "Assisted" with the suicides of two more MSers. I sent Senator Boxer my past 2 correspondence with her, the Orlando article and a cover letter saying "Maybe if you look at it from this perspective, you may be more prone to help.Kervorkian has "Assisted" with two more suicides of women with Multiple Sclerosis. Maybe these two people were trying to get answers to this article and couldn't"!
She sent my letters to Diane E. Thompson, Associate Commission of Legislative Affairs,USA.Within 3 WEEKS! I had 15 pages of Research from Immunex Corp., the manufacturers of mitoxantrone. They're in the United States!
It's sad that it took MSers dying, to have someone finally listen...
Having Research right in front of me, evidence, proof, I again had Allen,my attendant and friend, make copies and sent them out. Thinking, surely they would listen now and investigate and report on this treatment. I was wrong... Again, no replies or those standard little postcards.
I started using AOL and came across a website THE SILVERTONE PROPHECY for Gary Shane, he'd been to Greece for the treatment! Gary gave me the phone number and Fax for Dr. Kountouris of Greece. Gary told of his experience and how he was trying to go back to Greece.
I finally made contact(Nov.1996)with Kountouris's nurse, her saying I had to come to Greece for the Doctor to be able to help me.Dr. Kountouris in a Fax said the same thing.
I was excited to make contact but at the same time I was completely depressed because there was/is no way I could afford to go to Greece. Travel, lodging and treatment were not in my future.
I Again attempted to get my neurologist to do the mitoxantrone treatment.He refused because "The treatment is not approved for MS in the United States"AND(this gets me!!) He's not "Familiar with this drug"...MY neurologist, said "I would feel bad if I hurt you"(I couldn't believe that response) I told him, "You're hurting me more by NOT doing this treatment." He still refused...
My MS is worse.... I started this investigation being able to use the remote control for my TV and steering my electric wheelchair.Now-I can't do anything close to that. I'm in the process of ordering (from Medi-cal) a wheelchair that is controlled by air, puffing and sipping into a tube.
That may sound "Cool" to some but all that that reminds me of is that I'm becoming a"Talking Head". I'm 47 years old this October with the potential of an Institution, (a Medi-cal Institution) It should be my choice, RIGHT to try a treatment that has such positive results. Anyone in my position should have that choice.My "Quality" of existence should give me that RIGHT. My future is an institution, THAT'S NO FUTURE...NO LIFE...
Two months ago (July 97) my new GP, Dr. Forest,(Santa Cruz, CA) agreed to help,saying she would support me in my trying to do the mitoxantrone treatment! I am elated to FINALLY have a Doctor that is willing to help me. She gave me an Oncologist name,Dr. Pomeroy, (Soquel, CA) whom she'll refer me to next week (Sept. 97) after I have the necessary tests completed. Which are a MUGA scan (like an EKG) and blood workup.
For all this to be completed and for me to start the Mitoxantrone it will not be till October 1997. Treatment will be once a month for probably 18 months, if all goes well!! Than it will be a maintenance program of every 3 months (that's my understanding)
I will be using Dr. Kornhuber's protocol, (Neurosurg Psychiatry Feb.1997) which is now published. I have a website which Vicki Krub of Montana started for me. An abstract of the Mitoxantrone protocol is at that website Mitoxantrone
The Mitoxantrone treatment is $800.00 per treatment per month.In order for me to use this treatment, I've had to find a way to pay for it.(Insurance, Medi-cal and Medicaid won't)
Immunex Corp. has a program called "Patients Assistance", which is that they will donate the drug, if a person "Qualifies" because of meeting poverty level criteria. Needless to say I differently qualify! Dr. Pomeroy will accept payments for his services.
I have tried everything I could with the physical limitations I have.
As an adult, I've never been in a situation of complete dependency, until Disabiity... I've never been treated with such disrespect as a human being until Disability... And I've NEVER been treated with such DISREGARD until Disability...
MS has control of my body, people with Position HAD control of my future...UNTIL NOW!!
Before this treatment starts,I want to thank my attendant Allen
Bersaglieri,without him I would have not gotten as far as I have as fast as I have... 2 years isn't fast (in some circles) but 2 years without Allen would still have me frustrated with trying to figure out how I would get things copied and mailed, taking notes, putting up with my
depression,anger,frustration from all the obstacles and my worsening
MS....AND. ..Getting me to appointments and getting me to my future
mitoxantrone appointments!!
My Therapist and friend, Dr.Alison Freeman, without her counseling, frindship and research help, I would have lost my sanity, humor and pleasant personality!!:-)
There are many people within these past two years that listened to me
complain get angry and give up on numerous occasions...I THANK YOU ALL......for staying through it all.
Which ever way this treatment takes me... it's MY CHOICE... Wish me
...SUCCESS!!!:-)
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