****Crash test dummies:Hmmm hmmm hmmm**** Jump done! Just got collect the money for it to finish and star the next challenge. It was amazing!!! Fantastic rush! I didnt pass out or chicken out. No brown pants time. I want to do it again! The unity of the group was just as good as the jump itself. Big group of girls and boys there for the head rush. Hand shakes from hell!lol! It was jumping out with a bunch of surfers. I had a great time. I will put a link to the hall of fame when my pic comes up. There is a video taken from the jump site by my brother in-law. That I will get up here once done. You will see a picuture from this site:
The site is behind real time but look out for jumpers on the 29th of july 2006 when it comes up. I will be checking to make sure you see it. I was wearing the Larry t-shirt I got from Kim. They gave me a voucher for £25 off the next jump should I want to do it again(that might be a good idea!) I HAVE DONE IT! 14000 FT at 120 mph! life goal 1 and 2 Done!
1.Made my father proud of me! 2.Jump out a plane and do a freefall paracute jump!
Loved it! Now I have to get the money in from work. £1000 for the ms society....Its not enough! I will get more. I already have plans for that. Watch this space!
Hope you are all well(I am relaxing at my parents for a while) I forgot my copaxone and I have never done 4 days without it before!Just time for a drink.) Dave
If you dont believe in alternate therapies then you can watch how it helps me over the next 120 days. You seen the stuff I put up here normally. Lets see if gets better!
Before I go further into it I want to give you a clearer update on what I am looking for with the druming samplesI want from you. I am looking for 30 seconds of noise!Please dont send white noise! Just looking for a beat using something individual to you. For example Jaime has sent me a recording of a crisp packet being crinkled for 30 seconds! Thats fantastic and just what I am looking for. I dont want everyone to do the same thing. Just do something individual to you for 30 seconds and email it to me: david_wharrier@hotmail.com
The program I am using can take the sample and loop it to give a beat. I have one of Jamie saying "I love you too!"! If I loop it and add to it it sounds great! "I love you!" "I love you too!" "I love you" "I love you too!"
etc etc. you get the idea? If you dont want to hit something....then say it! I will mess with each sample and get the tune done. The ginko will help me with my memory so I will get everyone in some how. 30 seconds of your time thats all I ask. You dont need to give me a video but it would be great to see you all in the finished video! Put a face to ms and give it the sound track we diserve! Come on we can do this!
I am going to hospital today to get messured up for a wheelchair(ass fitting!) but I real do want you guys to record your drum beats and post them on www.youtube.com so we can see them on here too! You dont have to have rythm or anything(I will sort that out from here if you send them to my email!) just need to start collecting them so I can mix them into a tune. Weather its a smashing plate or pens on the table or beating a bin on its side. Just need to have it recorded and sent to me. There are so many bands created on the internet that are snapped up and reach number 1 in the charts here! Come on lets give it a go! Give it to me baby!hehe I am serious! Do it now!!!!!
Record it through you webcam, video recorder what ever format you can but get it to me. There are so many bands that have done it before so why cant we!
my email: david_wharrier@hotmail.com
You dont need to show your face if you dont want to. Just lets get this done so we can start getting the public to hear US! Lets do this please!
*****Update: I just got back from disablment services and they messured my ass for a wheel chair.... "Would you like a green one Mr Wharrier?" "Err what else is there?" "blue!" "No" "Red!" "No" "Black!" "Hook me up!!!" "You are a big boy arnt you" "You saying my bum looks big in this?"
Always the comic in hospital....I dont know why! Maybe its because they poisend me last time with chemo! 6 weeks before it gets here! Brand new too! Oh well Hope you are all well Dave
I love the drums..I always have done but these guys have given me an idea. Have a listen to this:(you may need to turn it UP A LOT!)
It appears that we not need a drum to make a noise, we can use anything to make a noise and get rid of that bubbling anger you have building up in you body everythime you loose an ability with this damb disease. I not asking you too climb a building and wack something.....Or am I?:
We just need to make a noise about this disease and get some money at the same time to get us a cure. My idea is to get a charity together so can get people to listen to us. Its only a starting idea and I will need some help to get up and running but I am sure there is people out there who want to beat the hell out of something and raise money at the same time. Just think....All the people in the world hitting this disease and making a noise about ms. Got any rhythm? Just think of the music stars together making music as one rythm. CAN WE DO THIS? CAN YOU DO YOUR BIT AND SMACK MS IN THE ASS? Grab something now and wack it! Anyone have any idea's how we can use this? I was thinking buy some ms drum sticks or something! Beat the ms drum day? Come on lets get some idea's on the table. We are good at that bit I know we are. The body might not work properly but the brain still works eh!
Jump on saturday. wish me luck too as I am sh*tting myself!hehe! Hope you are all well! Dave
I am sorry for abusing you my body.. I am sorry for lie'ing to you! I am sorry for not treating you with respect you diserve I am sorry for not being the man I should be I am sorry for being a child up to now! I am sorry for cheating on you! I am sorry for giving you the blues I am sorry for not letting you go to do the best you could I am sorry for not... I am sorry for doing,saying and being! I am sorry for saying I am sorry and not doing I am sorry for saying sorry I am sorry for drinking too much coffee I am sorry I am sorry I am sorry I am sorry to all the women who I promised the world too! I am sorry for not being there when you needed me I am sorry for loving you! I am sorry for not loving you I am sorry I am sorry
Now please let me rest without pain. You hap-less bastard ms! You were the one who threw down the gauntlet, prepair for a kicking you bastard. I will win....I hope!
From the man who put the M in manchester...He isnt sorry!hehe
Friday with Bobbeh....Listening to some great rock and getting drunk. Great tunes and had a great night....getting drunk! Saturday with Jen....Listening to great rock and getting drunk. Fantastic night apart from the small bird in my bathroom!(it was a moth, but the biggest moth I have ever seen in this country!) Jen squeeled like a little girl it was realy funny! Thanks for cleaning up in the morning(I didnt ask either!) when I was still asleep!(naughty girl!) But now is....recovery! Have a bit of my favorite Slipknot:
I would like to introduce Jean Martin Charcot(1825-1893) was a French neurologist, considered the father of clinical neurology, born in Paris, and educated at the University of Paris. In 1856 he was appointed physician to the Central Bureau of Hospitals. In 1860 he became Professor of Pathological Anatomy in the Faculty of Medicine at the University of Paris. Two years later he joined the staff of the Salpêtriÿre Hospital, and he opened the most highly regarded neurological clinic of his day, unique in Europe.
Charcot is considered by some the founder of modern neurology. He made many important observations on neurological diseases, differentiated multiple sclerosis and paralysis agitans, and wrote on many neurological subjects. In 1868, he made the first diagnosis of MS and the Clinico-Pathological definition stated by Dr. Jean Martin Charcot still holds today. He specialized in the study of hysteria, locomotor ataxia, hypnosis, and aphasia. Cerebrospinal sclerosis was named Charcot's disease after him. Achieving international fame, Charcot became an honorary member of the American Neurological Association in 1881. He attracted pupils and scientists from all over the world. His most celebrated pupil was Sigmund Freud.
Charcot took an interest in the malady then called hysteria. It seemed to be a mental disorder with physical manifestations, of immediate interest to a neurologist. He believed that hysteria was the result of a weak neurological system which was hereditary. It could be set off by a traumatic event like an accident, but was then progressive and irreversible. To study the hysterics under his care, he learned the technique of hypnosis and soon became a master of the relatively new "science." Charcot believed that a hypnotized state was very similar to a bout of hysteria, and so he hypnotized his patients in order to induce and study their symptoms. He did not plan to cure them by hypnosis -- in fact, he felt that only hysterics could be hypnotized. He would hypnotize patients for groups of students and others, gaining the nickname "the Napoleon of the neuroses. *****Sound garden**** Well? The first nero and the first ms case! Do I rock? I had the idea that ms was caused by nuclear testing and humans messing with splitting the atom but checking the dates for the first nuclear studies....it sort of gets rid of that idea! Unless...There are several ways nuclear pollution happens...Take the steam engine for example. Burning coal as a fuel caused the greatest pollution in the 1800's. The effect caused our greatest damage to ozone layer. Holes in the ozone layer will let Gamma radition through causing lots of things to humans, cancer being one...What about ms? I need to look into this a bit further but something to think about eh? Hope this helps and you are all well! Dave
I cant believe it but I have found a gig I went too!
I have watched it twice now and I can see me and the ex at the back! It was a top gig! I am wearing a black tshirt with pixies on it and I am sat down at the back!(lol,I think most of the people there where dave!) Enjoy!
I have to go out today to follow up on a claim for council tax benifit...they have sent me a letter requesting I go to court to explain why I havent paid... Well if there claim section talked to there payment section they wounld have to charge me £72 for sending me the letter!!!!!!!!! WHERE IS MY MIND!(its in the post Dave)AAAAARRRRRGGGGGG!!!!!
Tomorrow I will show you some research that I have been doing!
Hope you are all well! Dave
*****Didnt make it! too hot again, going back to bed to drown in sweat!
The idea that an alternative therapy would help with ms pain was worrying to be honest. But I have wanted to get something that didnt take medication or drugs to help. When I found out that my sister was looking into reiki healing I thought it might be a phase or something and wanted to see what she could do. Last time I was at my parents my sister was there and both my parents said I should try it as they thought it was pretty cool and may help. I knew a little of reiki having read up on the internet and I was interested. Some people have said its just relaxing, crazy beatnick hocus pocus but I couldnt make an opinion without trying it. I trust and love my sister so I felt comfortable with her.....so why not?
The first time took about an hour, I lay down and listened to the music in the partly darkened room. Sweet smelling incence was burning in the corner of the room and I started to relax and the tremors, that is usual, slowly ebbed away. My sister was talking to me all the time, she didnt need me to feel relaxed just normal conversation really. We hadn't seen each other for some time and were catching up. She came round the top of the bed and put her hands over my head. Placed her hands on my face. I smiled and started to laugh. She laughed too and kept her hands in place. I closed my eyes and let her get to work. She changed the placing of her hands to the side of my head, then over my ears, then over my neck. Her hands were starting to feel warm and I have no idea what she was doing. As she moved over my body I asked her why she was placing her hands in certain area's. She told me about chakra's and points were my Chi was being blocked. I know a bit about Chi as I have read Joels blog on tia chi and ms and understand that there are bits about the human body that the docs dont know. Once she had finished one side of my body as asked me to turn over after taking a drink of water. I was really thirsty. She started at my head again and moved down my back towards my feet. Her hands were really hot but not uncomfortable, quite relaxing. I noticed pain had stopped through my body but didnt want to place all my hope on it so didnt say anything. You dont want to tempt fate when it happens do you! I did feel relaxed.....No, I would say hyper relaxed. She finished with my feet and felt I would go to sleep if I didnt want to know more about what she thought about what happens. We talked for about 15 minutes afterwards and she told me where I had pain and where she could feel it!!!!!Woah!!!! She was spot on! Over the next three days I spent 2 more seasons with her..... If I am honest I cant wait for the next time.
This was a message for Lauren on July 12th: Jen, you GOTTA love a guy that loves music by Marvin Gaye..oh yeaaah! Happy anniversary you two. Let me introduce myself...Hi all, I was a patient that testified via videotape at the FDA AC hearing on 3/8/06 to try and get Tysabri back to those of us that need it. I've been living with MS for 30+ years and for 29 of those years, I was RRMS and was starting to have disabling relapses. I had my one and only infusion of Tysabri in 2/05...WOW, what a difference it made in my increasing disabilities! Tysabri stopped my attacks, and improved my symptoms so much I went from a walker to a cane with no limp within 2 weeks of my infusion! Then after the drug was pulled on 3/1...I was ok until 6/5/05 and then I had my worst relapse/attack ever which left me w/c bound. But I know Tysabri can help me again...it may take longer to show improvements again, but Tysabri gave me hope, and I have faith in it. If anyone would like to correspond with me about MS, Tysabri, or the small risk of PML, you can reach me at LGLBGL2003@AOL.COM. You can also check out my homepage at http://hometown.aol.com/lglbgl2003/myhomepage/profile.html and I'm in the process of creating my own blog "Living With MS" for others to share ideas and comments about their MS and/or therapies (I support the patient's right of choice, whichever therapy they choose). Be well, all my very best to all who read this. Lauren :)
When you get a blog I will put a link in asap! Welcome! I wish it was under better terms. Thankyou for taking time to visit and thankyou for taking the time to talk about tysabri, you have done great work for us.
****OUCH Podcast is on number 4! give it a listen>>>>>> Hope you all well and keeping cool! Dave
We all have dreams....well dont we. If anyone can help this dude Carlos for the ms express(and the three legged dog!awwwww) Please click here! The ms express diserves a break as we all do. Pop in and say hi! For the last five years, Carlo has been planning this incredible journey. Having to cancel it twice due to health issues, Carlo is determined to make it happen in 2006. Following an official send-off in Anacortes from Mayor Dean Maxwell and a “great escape” celebration in Burlington, Carlo will make his way to Safeco Field, home of the Seattle Mariners, for his first official stop along the MS Express. After throwing out the first pitch at the June 5, 2006 game against Kansas City, Carlo will begin his six-month journey, traveling along the northern United States to New York City. In addition to assistance dog Katie, Carlo will be accompanied by long-time friend Dan Townsend and his dog Emma in a 36 foot handicapped accessible RV, donated by Foley RV and Freedom Roads RV two of Carlo’s many generous sponsors.
As he travels across the country, Carlo will make keynote stops as the Ambassador for Accessibility Issues on behalf of the City of Anacortes (Washington). With the goal of raising awareness for handicapped accessibility, Carlo will make official visits with city officials, store owners, civic groups, community organizations, and others afflicted with chronic diseases or disabilities. He will gather information, ideas and design standards from ADA compliant communities to share with the City of Anacortes and its Barrier Busters committee. In addition, this information will be available free of charge to interested individuals, organizations and communities at The Spirit of Hope Foundation’s sister site Able Neighbor.
Yesturday was a nightmare for me. Sweaty death on toast....but I have a shop in now so it was worth it. Its so hot..... ******Marvin Gaye:I wish it would rain****** Jen is coming today and I am going to cook to celebrate a 1 year anniversary.....We all have challenges but I know we have more focus then anyone to get things done. Good luck Carlos and good luck to me too! Good luck to us all!
I tested the heat this morning by taking the rubbish out. Its too warm to go to the shops! I would die en route. I have money in the bank as the DLA comes in on the 14th! It sucks not having the ability to get out there! If I could drive....hmmm!
I guess its going to be another day of CSI and lying necked in bed.....oh joy! At least the CSI is good! Who are you!
Have some of this: ******Chemical Brothers:Dig your own hole*****
Thats better! Still hung over. Might be the mix of pain killers and beer and wine....erg! I will get back to buisness soon! I am not an alcy....A druggy maybe...But not an alcy!lol
Just because I am ill doest mean I can't have a good time! I have no money to be doing it on my own so I have to enjoy it while people are around! I had a great time and I dont effect anyone else's life at all. So why not!
I had a top night last night. Bobbeh came round again(wow thats twice in the space of 4 weeks!) he got the beer in and he even bought wine in! I was so ill! That must have been my first vomit this year. Chateauneuf du pape blleeeaaarrggg Expensive red wine and not tasty on the way back up. I think we drank them in the wrong order....there is a limeric for it isnt there:
Beer then wine is fine wine then beer makes you queer.
Which ever way around it is I am not doing it again. Mixing my drinks is a no no!hehe! I even got in touch with Em by text last night, I miss her! I wanted Jen there so much.
Got a home visit today with local housing benifit team!
Recieved some post yesturday from my ms nurse telling me I can't be involed in the canabis trail as I take Copaxone....Grrrrr! I hope there is someone near to Manchester hope hospital who can be. There are 50 places available. I would think we all have the same nero. Oh well I just hope the trail bring something up which helps. Fingers crossed eh!
At least she knows I want to be involed in finding a cure or a managable treatment in future!
I have a meeting with the housing benifit team....They are coming to my house??? Dont know why they need to see it! I have to clean up now. Maybe the just have to see me. I dont know how to handle it at all....So I am going to be honest as I can be and show all my paper work. I guess thats what they want! I let you know how it goes.
Hope you all liked the tune yesturday and hope your all well! Dave
*****Ian brown:Fear***** For Each A Road For Everyman A Religion Find Everybody And Rule For Everything And Rumble Forget Everything And Remember For Everything A Reason Forgive Everybody And Remember
For Each A Road For Everyman A Religion Face Everybody And Rule For Everything And Rumble Forget Everything And Remember For Everything A Reason
You got the Fear You got the Fear You got the Fear You got the Fear You got the Fear F.E.A.R. (You got the fear) F.E.A.R. (You got the fear) F.E.A.R. (You got the fear) F.E.A.R. (You got the fear)
Final Eternity Arouses Reactions Freeing Excellence Affects Reality Fallen Empires Are Ruling Find Earth And Reef
Fantastic Expectations Amazing Revelations Final Execution And Resurrection Free Expression As Revolution Finding Everything And Realizing
You got the fear You got the fear You got the fear You got the fear You got the fear F.E.A.R. (You got the fear) F.E.A.R. (You got the fear) F.E.A.R. (You got the fear) F.E.A.R. (You got the fear)
(Fantastic Expectations Amazing Revelations Finding Everything And Realizing For Everything A Reason)
F.E.A.R. (You got the fear) F.E.A.R. (You got the fear) F.E.A.R. (You got the fear) F.E.A.R. (You got the fear) You got the fear You got the fear You got the fear You got the fear
What a tune. Woke up singing this at 11:45.....ms inc!
FOR EVERYTHING A REASON Forgive everybody and remember! Finding Everything And Realizing! (He is from manchester! Someone local Jamie!) Dave
Back to business! Baclofen! Can it get rid of the wobbly legs?
Name:Baclofen
Description:Baclofen acts on the central nervous system to relieve spasms, cramping, and tightness of muscles caused by spasticity in multiple sclerosis. Use in U.S and Canada but having difficulty finding info in the UK!
Proper Usage:People with MS are usually started on an initial dose of 5 mg every six to eight hours. If necessary, the amount is increased by 5 mg per dose every five days until symptoms improve. The goal of treatment is to find a dosage level that relieves spasticity without causing excessive weakness or fatigue. The effective dose may vary from 15 mg to 160 mg per day or more.
Precautions If you are taking more than 30 mg daily, do not stop taking this medication suddenly. Stopping high doses of this medication abruptly can cause convulsions, hallucinations, increases in muscle spasms or cramping, mental changes, or unusual nervousness or restlessness. Consult your physician about how to reduce the dosage gradually before stopping the medication completely. This drug adds to the effects of alcohol and other CNS depressants (such as antihistamines, sedatives, tranquilizers, prescription pain medications, seizure medications, other muscle relaxants), possibly causing drowsiness(whoopy!). Be sure that your physician knows if you are taking these or other medications. Studies of birth defects with baclofen have not been done with humans. Studies in animals have shown that baclofen, when given in doses several times higher than the amount given to humans, increases the chance of hernias, incomplete or slow development of bones in the fetus, and lower birth weight. Baclofen passes into the breast milk of nursing mothers but has not been reported to cause problems in nursing infants.
Possible Side Effects:Side effects that typically go away as your body adjusts to the medication and do not require medical attention unless they continue for several weeks or are bothersome: drowsiness or unusual tiredness*; increased weakness*; dizziness or lightheadedness; confusion; unusual constipation*; new or unusual bladder symptoms*; trouble sleeping; unusual unsteadiness or clumsiness*.
Unusual side effects that require immediate medical attention: fainting; hallucinations; severe mood changes; skin rash or itching. Symptoms of overdose: sudden onset of blurred or double vision*; convulsions; shortness of breath or troubled breathing; vomiting. *Since it may be difficult to distinguish between certain common symptoms of MS and some side effects of baclofen, be sure to consult your health care professional if an abrupt change of this type occurs.
(Details taken from the ms society USA) **********Prodigy:Naryana*********** There is so many drugs to come. Please send me an email with what drugs you are getting and I will look into it. It will help others honest! I am getting replies every day with these. Lets kick some ms ass!
Marketed By: Bayer HealthCare in Canada and by Almirall in Europe (except in the United Kingdom).
Intended Use: For the treatment of muscle spasticity and neuropathic pain associated with multiple sclerosis.
Profile of User: A person with multiple sclerosis in Canada who has been prescribed Sativex for the above reasons by their doctor. The drug is also available to some patients in Catalonia, Spain who either have multiple sclerosis, AIDS, or who have cancer and are undergoing chemotherapy treatment. Although Sativex is a controlled drug in the U.K., it is available as an unlicensed medicine imported from Canada.
What It Is: A buccal spray consisting of the active ingredients delta-9-tetrahydrocannabinol (THC) and cannabidiol (both from Cannabis sativa, the marijuana plant). The spray also contains ethanol anhydrous, propylene glycol, and peppermint oil, all of which are non-medical ingredients that help with the delivery of the drug.
How It Works: The active ingredients act at cannabinoid receptors (CB1 and CB2) in the central and peripheral nervous system. In terms of the drug’s effect on pain management, CB1 receptors are present in pain pathways in the brain and spinal cord and on the terminals of primary afferent neurons in the peripheral nervous system where they may mediate cannabinoid-induced analgesia.
History: - Marijuana has been used for thousands of years for a range of purposes including food and oil (from seeds), rope, pain relief, sleep aid, muscle spasms, to relieve nausea, control seizures, and to increase appetite. During the past century, recreational use of marijuana in the west increased and attitude towards the drug changed. In the early part of the 20th century, marijuana was outlawed in most western countries and years later it was also outlawed for any medical uses. - In the 1990’s in the UK, increasing numbers of MS patients were being brought to court under drug charges related to marijuana use. Typically, they received light sentences or the charges against them were dropped. The government became concerned about drug laws being brought in to disrepute and seemed to become more open to a pharmaceutical form of marijuana being developed for medical use. - Around this time, businessman Geoffrey Guy approached the U.K. government about developing a cannabis-based drug from cloned marijuana plants (which would give him exclusive rights to drugs developed from the particular plants). The government approved his proposal. - Through his new company, GW Pharmaceuticals, Guy bought several Sativex continued
- strains of cannabis that had high drug yields and by the late 1990’s had a crop of 5000 plants. The company decided to produce a spray that would be applied under the tongue in order to produce a consistent absorption rate. - In 2003, clinical trials began. Trials showed Sativex to significantly reduce pain experienced by MS patients and to a greater extent than any other medications currently marketed for that purpose. - In May 2004, Bayer agreed to market Sativex. - In Spring 2005, Health Canada approves Sativex for the treatment of multiple sclerosis pain. - 2006 The ms society uk appove 500 test subjects for canbiboid test in progressive RRMS, I (Dave!)have asked my ms nurse to be included in this test through my Dr Mottershed at manchester Hope hospital. Fingers crossed eh! Or maybe peace man!
Hmm could be good but I know something else which is working for me. Thanks sis with her healing hands. I will do an update with this tomorrow!
I was going to do Stavitex today but I have to tell you...
I have just returned to normality after a great weekend and a massive drink with my dad and step brother....But that's not the good news! When family is so important to me it is,it was great to see a picture of a new edition to my family. My sister in law is pregnant!!!!!!
Intended Use: For the treatment of relapsing-remitting MS
Profile of User: Currently, trials of the drug are being done with patients who have been diagnosed with relapsing-remitting MS (RRMS) in last three years, are from 18-45 years old, and have an Expanded Disability Status Scale (EDSS) score of 0-3.5. The trials are taking place in the United States, so most participants are American. If the drug makes it to the marketing stage, it will be aimed at people with RRMS.
What it Is: An autologous vaccine. What this means is that it is a vaccine made from the recipients own blood. Tovaxin consists of the patientÃ’s T-cells (a type of immune cell) that (when one has MS), attacks the nervesÃ’ myelin.
How It Works: Once blood has been taken from the patients, tests are done to find T-cells in the blood that attack myelin. Those T-cells are replicated and are irradiated so they cannot reproduce. Once there are enough replicated T-cells (approximately 45 million), they are injected back into the patient. The body responds to this by producing antibodies that target and eliminate those specific types of T-cells (the oneÃ’s that attack the myelin) throughout the patientÃ’s body. Therefore this vaccine addresses the underlying causes of myelin attack.
History: o In the mid 1990Ã’s Dr. Jingwu Zhang began conducting trials of T-cell vaccines in Belgium. o Shortly after, Dr. Zhang was recruited by the Baylor College of Medicine in Houston Texas and in the late 1990Ã’s began a clinical trial involving 114 R-RMS patients. o In 2001, Baylor gave exclusive license to Opexa Pharmaceuticals (a company that was formed around this license), to further develop the T-cell therapy. Opexa began more clinical trials. o On November 9, 2004, Opexa is bought by PharmaFrontiers. o On September 30, 2005, PharmaFrontiers presents data at the 21st European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and the 10th Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) congress held in Thessaloniki, Greece that shows Tovaxin to reduce relapses by 92%. o In March of 2006, PharmaFrontiers prepares to begin Phase IIb trials of Tovaxin in the U.S. Once these trials are complete, the next step is to enter in to longer Phase III trials before Tovaxin can gain FDA approval. o March 22, 2006, PharmaFrontiers announces that it will present more data on Tovaxin at the 20th Consortium of MS CentersÃ’ annual meeting held in Arizona from may 31-June 3 2006.
Benefits: So far, there seems to be a 92% reduction in relapses. Also, once the body is no longer under attack and able to heal itself, many lost functions can be restored. For a wonderful story about the benefits of Tovaxin, please see TimÃ’s story at ihavems.com.
Administration: Subcutaneous injection approximately four times a year.
Cost: I have not been able to find much information on the cost. Apparently, it should be much less expensive than other MS drugs (yipeee!).
Side Effects/Disadvantages: I have not found much on this subject either. Patients do need to be monitored in case there is some strange reaction and their immune system becomes depleted, but because the vaccine is made from the patientÃ’s own cells and the action is so specific, there does not appear to be any side effects.
I guess that points towards the wounder drug side of the scale. Yet again thankyou for this Steph. Your father seems like such a great bloke for mailing me. I hope your both doing well and your looking after each other! Tomorrow I would like to go toward alternate therapies as I have been looking into a few. I have now had experience in one this week and cannot wait to get it up here! I have a few more from Steph(as she is fantastic!) and then I will get back to some rock(sorry!lol)!
Intended Use: For the treatment of partial onset seizures and neuropathic pain (pain from nerve damage) associated with diabetes and shingles.
Profile of User: An individual with any of the above conditions. The drug is also being used off-label by people with multiple sclerosis who suffer from neuropathic pain as well as by people with fibromyalgia and general anxiety disorder.
What It Is: A structural derivative of the neurotransmitter GABA (though it does not bind to GABA receptors).
How It Works: Although the mechanism of action is unknown, the drug is thought to modulate voltage-gated calcium channels in the central nervous system. Pregabalin binds to alpha2-delta sites, which are auxiliary subunits of voltage-gated calcium channels. Prolonged use of pregabalin increases the rate of GABA transport.
History: • Lyrica is a successor drug to Neurontin (gabapentin), another anti-seizure drug that was put on the market by Pfizer in 1983. What seems to be the main difference between the two is that Lyrica is more potent and has fewer side effects. • Following six double-blind placebo-controlled trials, the FDA approves Lyrica on December 31, 2004 for the treatment of neuropathic pain associated with diabetes and shingles. • Following three double-blind placebo-controlled trials, the FDA approves Lyrica on June 10, 2005 for the treatment of partial onset seizures. • September 19, 2005 Canada approves Lyrica for the treatment of neuropathic pain associated with diabetes and shingles. According to my pharmacist, he also currently dispenses it for seizures, depression, and neuropathic pain associated with MS. Because I got a free sample from the MS clinic, I wonder if Pfizer is seeking approval for the use of Lyrica for MS neuropathic pain.
Benefits: Reduction of seizures by 51% and a significant (though subjective) reduction of neuropathic pain.
Administration: Lyrica is taken orally up to three times a day with a maximum of 600 mg per day.
Cost: Lyrica costs approximately $111 a month in Canada. Pharmacare does not cover it and private coverage varies. For my month supply that I just bought, I paid $28.00 and my private insurance, Green Shield, paid the rest.
Side effects/Disadvantages: Common: Unlikely: • Drowsiness • Change in amount of urine • Dizziness • Difficulty speaking • Confusion • Loss of coordination • Difficulty concentrating • Mood changes • Unsteadiness • Muscle pain, weakness • Fatigue • Stomach pain • Swollen arms/legs • Uncontrolled movements • Increased appetite • Unusual tiredness • Weight gain • Vision changes • Nausea • Dry mouth • Constipation Rare: • Unusual bleeding or bruising • Slow or irregular heart beat • Allergic reaction
Not too bad on the side effects eh? Just like ms really or is that just me? Thanks again Steph! I kinda like this. I am relaxing at my parents house at the moment, I am eating well being cared for and all the worry I had last week has gone.....its horrible! I want my house and my problems, my space. I dont want to share the bathroom with my younger siblings any more!!!! My sister is married and has come back this week aswell! Its just not my shade of hell here!(its worse!) I get back to my house on sunday night so all will be back to normal, bills and forms to fill in, hospital visits and jumping out of a plane for charity(hopefully), smoking in doors, my own beer. Some times the perfect home can be to much. The only thing thats keeping me sane is the impending girly visit on tuesday. Oh and other peoples beer....so I guess its not too bad!(love you guys!) Check this little kid out, he rocks:
Name: Tysabri, Natalizumab (previously known as Antegren)
Marketed By: Biogen Idec Incorporated and Elan Corporation
Intended Use: For the treatment of relapsing-remitting MS, lupus, Crohn's disease, rheumatoid arthritis, and melanoma.
Profile of User: A person afflicted with any of the autoimmune diseases listed above or with melanoma.
What It Is: A monoclonal antibody (a protein naturally found in the body that is produced by the immune system in response to foreign substances), that is bioengineered from part of a mouse antibody that closely resembles a human antibody.
How It Works: By preventing T-Cells (immune cells) from binding to epithelial cells (blood vessel linings) and entering the brain, where nerve cells are attacked, the gastrointestinal tract and joints.
History: • In 1988 Dr. Elizabeth Wayner began investigating whether or not T-cells adhered to epithelial cells at Dr. Bill Carter's Basic Sciences Division laboratory. The binding of T-cells to epithelial tissue would explain how these immune cells could attack the body’s own tissues, which is what happens in autoimmune disorders, including MS. • Dr. Wayner develops an antibody that specifically interferes with the T-cell’s ability to bind to epithelial cells. This antibody interferes with the T cell's ability to bind to blood-vessel linings. • In 2000, Biogen and Elan begin developing Tysabri and begin clinical trials. Tests showed there to be a 67% reduction rate of relapses in patients with RRMS. • November 2004, Tysabri receives accelerated approval from the FDA. • March 28, 2005, Tysabri is removed from the market after three cases of multifocal leukoncephalopathy (a usually fatal demyelination disease) is confirmed in trial participants. Two of those patients died. • In March 2006, three more Tysabri trials wrap up and report the drug to be highly effective and the development of multifocal leukoncephalopathy to be a rare side effect. • March 8, 2006, FDA panel votes to re-approve Tysabri for the market. • The US FDA decides to extend its review of Tysabri by 90 days until June 28th 2006. • Tysabri is not yet approved in Canada.
Benefits: Reduces relapse rate by up to two-thirds after two years of treatment and significantly slows the progression of MS.
Administration: Intravenously every 4 weeks.
Cost: $1,808 USD for each dose. $23,504 USD per year. As it is not approved in Canada yet, the price and coverage is yet to be determined.
Side Effects/Disadvantages: Common: • Headache • Fatigue • Urinary tract infections • Joint pain • Stomach ache Rare: • Depression and errrr there was those two deaths which took it off the market for 3 months but its ok now! • Cough (lower respiratory tract infections) • Pneumonia • Gallstones • Serious or life threatening allergic reactions • Multifocal leukoncephalopathy
Just for your info!
I have returned to parents for a long weekend as the heat is kicking my ass! I will be back soon honest! Havent heard from jen for about 6 days now as she has lost her phone....oh well it was great while it lasted! Love you babe!xxxx
Hope you are all well and enjoying these updates!(music will be back soon,got any requests?) Love and hugs Dave x
******Rez/Cowgirl By Underworld******I want my youth Back!!!!
Name: Novantrone, mitoxantrone Marketed By: Immunex Corporation/Serono Incorporated Intended Use: For the treatment of secondary-progressive MS, progressive-relapsing MS, worsening relapsing-remitting MS, and certain forms of cancer such as acute myelogenous leukemia and honnone-refractory prostate cancer.
Profile of User: An individual with a definite diagnosis of secondary-progressive MS, progressive-relapsing MS, worsening relapsing-remitting MS, and certain forms of cancer and who does not have heart disease.
What It Is: A synthetic form of anthracenedione, which is an antineoplatic drug (a substance that blocks the formation of growths that may become cancerous) that belongs to the family of drugs called anticancer antibiotics. It is a type of chemotherapy
How It Works: Novantrone is an immuno-suppressant that kills T-cells, B-cells, and macrophages (cells in the immune system). When a person develops MS, these cells are thought to become abnormal and attack the myelin sheath.
History: - Trials of Novantrone for the treatment of progressive forms of MS occurred over a ten year period, involving multi-centre, double-blind trials in different parts of Europe. - As a result of those trials, the U.S. FDA approved Novantrone for the treatment of secondary-progressive MS, progressive-relapsing MS, and worsening relapsing-remitting MS in 2000. - In 2005, the FDA added a boxed warning to Novantrone about the potential risk of heart damage and a form of leukemia called secondary acute myelogenous leukemia. - Novantrone is not yet approved in Canada for the treatment of MS, but is still prescribed by doctors for MS (off-label use). Benefits: Novantrone delays the time to first treated relapse and disability progression. It also reduces relapses and the number of new lesions detected by MRI scans.
Administration: Four times a year by IV infusion in a medical facility. Lifetime limit of 8-12 doses (12 mg/m2 every 3 months). Cost: The wholesale cost of Novantrone is between $1400-$2300 USD (depending on dose amount) for each use, and is used 3 or 4 times a year for two years. The cost in Canada is approximately half of that. Coverage varies.
And now the bad bits: Side Effects/Disadvantages: - Blue-green urine 24 hours after administration(not exactly a barrel of laughs!) - Infections - Bone marrow suppression (fatigue, bruising, low blood cell counts) - Nausea - Diarrhea - Hair thinning(WHAT!!!!!!!) - Bladder infections - Mouth sores - Serious heart and liver problems - In very rare cases, secondary acute myelogenous leukemia
****Wow, I know this one worked for me, even with the blue urine, I would say its the best feel good factor after the nausea runs out! It can take a while to kick in but when its working you will feel it! I had a full day in hospital with it on a drip!
Any way I will go back to diary soon. I havent seen Jen for a week and wont till next tuesday. God I need some music here soon!
Hope you are all being good and your all well! Dave
Intended Use: For the treatment of relapsing-remitting (RR) multiple sclerosis (MS).
Profile of User: An individual who has a clinical diagnosis of RRMS and has had two relapses in the last two years.
What It Is: Rebif is virtually the same as Avonex. Rebif (interferon beta 1-a) is almost identical to the natural beta interferon proteins produced in the body. The drug is extracted from Chinese hamster ovary cell using recombinant DNA techniques (cloning).
How it Works: All of the interferons are thought to work in the same way. Rebif is thought to work with the beta interferons that naturally occur in the body when the immune system is activated. It works by blocking immune activating effects of gama interferons (gama interferons increase immune response that attacks myelin in MS patients), and is thought to prevent immuno-cells that attack the myelin from crossing the blood-brain barrier.
History: - In 1997 the result of two year trial called PRISM (Prevention of Relapses and Disability by Interferon beta-1a Subcutaneously in Multiple Sclerosis)reported that Rebif reduced the number of MS attacks, slowed disability, and reduced the amount of damage in the brain caused by MS shown by an MRI scan. Additional data was made available in 2001. - The Federal Health Protection Branch approves Rebif for use in Canada in 1998. - Results of a trial testing the effectiveness of Rebif in treating secondary-progressive MS were published in 1999 and showed fewer relapses and fewer brain lesions as measured by MRI scans. Rebif has not yet been approved for the treatment of secondary-progressive MS. - In 2000, results of study that examined the early treatment of people without clinically definite MS were released. Those taking Rebif were shown to have delayed progression to clinically definite MS by 25%. - In 2001, results of the EVIDENCE (Evidence for Interferon Dose-response European-North American Comparative Efficacy) study are made available. This was a 6 month study that did a head to head comparison of Avonex and Rebif. Rebif proved to be more effective in the short-term study and Avonex lost its ‘Orphan’ status, which protected it from competing molecularly identical drugs for seven years in the U.S. - March 2002 the FDA approves Rebif.
Benefits: Slows the progression of disability in RRMS, decreases relapse rate by approximately 1/3, and decreases the amount of damage (or lesion activity) seen on MRI scans by approximately 1/ 3.
Administration: Subcutaneous injection of 44mcg 3 times a week.
Cost: A base cost between $17,000-$21,000 depending on dosage. In British Columbia, Pharmacare coverage is based on family income; once deductible is reached, Pharmacare pays 70% of costs; when family maximum is reached, Pharmacare pays 100% of costs. Drugs are 100% covered for people in long-term care facilities and those on social assistance. Private insurance coverage varies.
Side Effects/Disadvantages: - Flu-like symptoms including fever, muscle ache, nausea, headache, and fatigue. - Injection site reactions including itching, redness, pain, and swelling. - All interferons may cause fluctuations of liver enzymes, and lowering of the white blood-cell count. - Some users of interferons develop neutralizing antibodies (NABs) which interfere with or neutralize the effects of interferon treatment - Depression has been linked to interferon treatment. - Rare: mild anemia, liver failure, allergic reactions, and heart problems - (flu-like side effects and injection site reactions should lessen after continued use).
So What do you think? Is this giving you the information you need? Thanks again Steph!x
Name: Avonex, interferon beta-1a (The a and b difference with Avonex and Betaseron refer to a structural variation in the interferon beta molecule).
Marketed By: Biogen Idec
Intended Use: For the treatment of relapsing-remitting (RR) multiple sclerosis (MS).
Profile of User: An individual who has a clinical diagnosis of RRMS and has had two relapses in the last two years; however, Avonex is also approved for use in individuals who may have symptoms associated with MS, but are not yet diagnosed with it.
What It Is: Avonex is very similar to Betaseron. Avonex (interferon beta 1-a) is almost identical to the natural beta interferon proteins produced in the body. The drug is extracted from Chinese hamster ovary cell using recombinant DNA techniques (cloning).
How it Works: All of the interferons are thought to work in the same way. Avonex is thought to work with the beta interferons that naturally occur in the body when the immune system is activated. It works by blocking immune activating effects of gama interferons (gama interferons increase immune response that attacks myelin in MS patients), and is thought to prevent immuno-cells that attack the myelin from crossing the blood-brain barrier.
History: - Interferons identified in 1957. - In 1994, an American company called Biogen reported on a multi-centre clinical trial that showed Avonex to reduce the number of relapses in people with R-RMS from 1/5-1/3 - 1996 the U.S. FDA approves Avonex for the treatment of R-RMS in the U.S. - In April 1998, Avonex is approved for use in Canada for the treatment of R-RMS by the Federal Health Protection Branch. - In 1998, Biogen began the IMPACT (International Multiple Sclerosis Secondary-Progressive Avonex Controlled Trial) Study. - Results of IMPACT study in 2001 showed Avonex to have a significant effect on the reduction of lesion activity visible in an MRI scan, but to not have any impact on the number of relapses in patients with secondary-progressive MS. - On April 18, 2005, a stronger warning about rare cases of liver failure was added to the Avonex side effects list by Biogen. - Recently, Avonex has been in trials use in conjunction with a new Biogen MS drug called Tysabri. Avonex is currently the most prescribed drug for the treatment of RRMS worldwide.
Benefits: Slows the progression of disability in RRMS, decreases relapse rate by approximately 1/3, and decreases the amount of damage (or lesion activity) seen on MRI scans by approximately 1/ 3.
Administration: Intramuscular injection of 30mcg once a week.
Cost: Base cost of $16,790 per year. In British Columbia, Pharmacare coverage is based on family income; once deductible is reached, Pharmacare pays 70% of costs; when family maximum is reached, Pharmacare pays 100% of costs. Drugs are 100% covered for people in long-term care facilities and those on social assistance. Private insurance coverage varies.
Side Effects/Disadvantages: - Flu-like symptoms including fever, muscle ache, nausea, headache, and fatigue.(so....like ms really!) - Injection site reactions including itching, redness, pain, and swelling. - All interferons may cause fluctuations of liver enzymes, and lowering of the white blood-cell count. - Some users of interferons develop neutralizing antibodies (NABs) which interfere with or neutralize the effects of interferon treatment - Depression has been linked to interferon treatment. - Rare: mild anemia, liver failure, allergic reactions, and heart problems - (flu-like side effects and injection site reactions should lessen after continued use). *** Vanessa Carlton:1 week till winter**** I wish, just need to be cool before I scare the neighbors going for my post in the nude again! Hope your all well, Dave
P.S If anyone would like to add to these please email me direct: david_wharrier@hotmail.com
Up and coming reports:Refib,Tysabri,Novantrone: mitoxantrone(smurf blood!),Lyrica, Sativex(weed!) and Tovaxin(the wounder drug!)
Intended Use: For the treatment of RRMS and secondary progressive MS.
Profile of User: People with either a clinical diagnosis of RRMS or secondary progressive MS who have had two relapses in the last two years.
What It Is: Beta interferons are a group of proteins that occur naturally in the body. Betaseron (interferon beta 1-b) is almost identical to the natural protein and is produced by delivering a segment of human DNA that contains the gene for interferon beta-1b in to Escherichia Coli, a bacteria, that clones or produces the protein.
How It Works: Interferons regulate the body’s immune system, fight viruses, and have some effect on the blood-brain barrier. Betaseron is thought to work with the beta interferons that naturally occur in the body when the immune system is activated. It works by blocking immune activating effects of gama interferons (gama interferons increase immune response that attacks myelin in MS patients), and is thought to prevent immuno-cells that attack the myelin from crossing the blood-brain barrier
History: - Interferons identified in 1957. - In 1980, scientists begin developing interferons for therapeutic use. - In 1981, Dr. David Mark, a researcher at the American Biotech company Cetus Corporation, clones the beta interferon gene. - Dr. Leo Lin, also with Cetus Corporation, alters the shape of the beta protein, making it more active than the first cloned beta interferons, and interferon beta- 1b is created. - In 1991 a three year, multi-center trial is completed. - In the United States in June 1993 the FDA approves Betaseron for the treatment RRMS United States. - The Federal Health Protection Branch approves Betaseron in Canada for the treatment of RRMS in July 1995. - In June of 1999, Betaseron is approved for the treatment of secondary-progressive MS.
Benefits: Reduces the number and severity of attacks in both RRMS and secondary progressive MS by about 1/3. It reduces the new or recurrent lesions, reduces enlargement of lesions, and reduces the number of active lesions
Side Effects/Disadvantages: - Flu-like symptoms including fever, muscle ache, nausea, headache, and fatigue. - Injection site reactions including itching, redness, pain, and swelling. - All interferons may cause fluctuations of liver enzymes, and lowering of the white blood-cell count. - Some users of interferons develop neutralizing antibodies (NABs) which interfere with or neutralize the effects of interferon treatment - Depression has been linked to interferon treatment. - (flu-like side effects and injection site reactions should lessen after continued use).
Hmmm well you wanted to know! Next, Avonex calling! Love you Steph! And yes Having a beer(or two) for you here! Its so warm here I can hardly move, good job steph is doing all the work!hehe! Saw Bobbeh this weekend and he gave me the album for Tool:10,000 Days, It is amazing and it was great to see you again dont make it so long next time! Hope your all dealing with the heat and your all well! Dave
Name: co-polymer 1, glatiramer acetate, Copaxone Marketed By: Teva Pharmaceutical Industries Limited Intended Use: For the treatment of relapsing-remitting (RR) multiple sclerosis (MS). Profile of User: An individual who has a clinical diagnosis of RRMS and has had two relapses in the last two years. What It Is: A polypeptide containing four basic amino acids – glutamic acid, lysine, alanine, and tyrosine. How It Works: Although there is no definite conclusion on exactly how the drug works(or if it does Steph.Dave)it is believed that glutamic acid, lysine, alanine, and tyrosine are all amino acids that are found in the immunogenic region of the myelin basic protein that is believed to be attacked during multiple sclerosis development. The drug is proposed to mimic this protein structure, serving as a decoy for primed T-cells that attack the myelin(oh ok....Dave).
History: - 1960’s at the Weizmann Institute of Science in Rehorof Israel, co-polymer 1 is synthesized to develop Experimental Allergic Encephalomyelitis (EAE, a disease in animals that models MS in humans) in animals.
- Scientists discover that when injected into guinea pigs, co-polymer 1 actually suppressed EAE.
- Following preliminary trials, Dr. Murry B. Bornstein at the Albert Einstein College of Medicine in Bronx, New York carries out a double-blind, controlled clinical trial. The study ran for two year and showed a decrease in relapse rate and overall disability in the patients injected with co-polymer 1.
- In 1987, a full-scale multi-center trial was conducted.
- An Israeli pharmaceutical company called Teva Neuroscience took on further development of the drug and decided on the trade name Copaxone. The ‘co’ represents the ‘co’ in co-polymer, ‘axon’ describes where the drug is thought to act on the nerve, and ‘one’ represents the ‘1’ in co-polymer 1.
- The United States Adopted Name Council (USANC) gave the name glatiramer acetate to the drug. The g, l, a, and t are the first letters of each amino acid in the drug and the ‘mer’ is the standard suffix used by the USANC to label polymers.
- Food and Drug Administration (FDA) approval for marketing in the United States in 1996 and approved for use in Canada in 1997
Benefits: Reduces the severity and number of relapses by approximately 1/3, reduces the occurrence of brain scarring, and protects the brain from scarring.
Administration: Subcutaneous injection of approximately 20 mg everyday.
Cost: A base cost of $12, 300 per year. In British Columbia, Pharmacare coverage is based on family income; once deductible is reached, Pharmacare pays 70% of costs; when family maximum is reached, Pharmacare pays 100% of costs. Drugs are 100% covered for people in long-term care facilities and those on social assistance. Private insurance coverage varies.
Side Effects/Disadvantages: - Requires four months of use before drug becomes effective. - Daily injection - Injection site reactions of redness, itching, pain, and swelling. - Post-injection reaction of facial flushing, tightness in chest, heart ‘racing’, and throat tightening (similar to a severe panic attack) experienced by 10% of users shortly after injection after many months of use. - (Side effects should lessen after continued use).
Current testing includes high dose injections which are showing as possitive...I know! Steph has also done Avonex but I will save that for later!
Hope this helps some people who are having difficulty with it! I know your out there! My mum has stop doing it! The decision is yours! I am still worried about it! I think I need to find more results before I question my nero! Hope you are all well! Dave
Name: personallog! Home: St. Annes, Lancashire, United Kingdom About Me:
I am 6ft 3" skinny and not well. I was diagnosed with ms in 2004 and I would like to speak with others who have ms. I have a want to raise money for ms charities. We have to find a cure for this hell!!!!
See my complete profile
