mandy 4/11/2003

I have a condition which is called scoliosis, which I have been told includes arachnoiditis can you tell me more. I have just started to read some of the symptoms and letters of many of the people who have visited the site and I cannot believe the similarities of mine to them, I have a curved spine which causes a lot of health problems but did not associate them with this condition ie frequent visits to the toilet and bowel problems and most of all lack of sex drive. you have to laugh cos if you don't you;ll cry Hi it is me again, Just to add i WOULD LIKE TO KNOW IF ANYONE OF YOU HAVE ALREADY HAD A SPINAL FUSION THEN HAD THERE RODS TAKEN OUT DUE TO RECURRING PAIN AND THEN BEEN TOLD THAT THE ONLY OPTION LEFT OPEN TO THEM IS TO HAVE IT FUSED AGAIN FROM TOP TO BOTTOM, I get episodes of really bad leg and arm pain and parathesia, several sever migraines weekly, and legs giving way, i am wondering if the fusion will help support the spine and stop it from pressing on the nerves that are giving me this pain.

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Alan Brunjes 4/3/2003

I only discovered the link between myelograms and the chronic pain that I have been suffering for 23 years today!! , I am obviously not alone in needing answers to so many questions......it helps just to know that I am far from alone.

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johnsac 3/21/2003

Hey! Iv'e been jerked around by the workman's comp. system, their crooked doctors and even the judges and my own lawyer. After being misled and forced to have multiple useless steroid injections, mylegrams,discograms surgeries that were not what was needed(ins.co.refused surgery doctor recommended and only allowed what they approved) I was left doped ,in pain and expected to return to work. After a return to work on high doses of pain killers I fell and could easily have been completely paralyzed o

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Eric Sutherland n/a 3/19/2003

Ciamar a tha thu (how are you)? Hello and greetings from the North of Scotland (Dingwall, Ross-shire) I am a fairly new member although my medical history goes back nearly 25 years. A few months ago I had more surgery involving a discectomy and decompression at C3/4 level plus a bone graft and fusion. This was to try to correct paraesthesia in both hands and arms, but was none too successful despite having been operated on by one of the most brilliant neurosurgeon and thoroughly decent human b

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Randi Stough 3/19/2003

Thanks Mike for fighting for recognition.....how could something like Arachnoiditis be "all in our heads" when so many worldwide have this? I was diagnosed in 1994 with an MRI film of my back taken in 1991. I'm still trying to clear my mental reports from the 3 year period that this was supposedly "in my head". If that were the case, why did the Orthopod continue to do epidural and facet injections with Depomedrol every 2-6 months during that period? I used to blame myself for being so naive,b

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David Pope 3/17/2003

This site is a godsend to those struggling to understand what the hell is happening to them and why. I am pushing to get diagnosed at present and am staring medical retirement in the face because of this debilitating condition. Keep up the good work Mike ~ your own thoughts and actions help more people than you could possibly imagine.

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Helen Colban Helen C 3/12/2003

Very informative site and the jokes break up the dire seriousness of this condition. My dear friend has MYODIL ARACHNOIDITIS and has suffered for many years. Its good to know she is not alone as she once thought she was? If there is anyone out there who lives in the Gloucester or South Wales area or if anyone knows of a help group who she can contact, please please let me know. I would love to make her life a little more comfortable and having someone with whome she can relate to would lift h

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Diane S 3/2/2003

Your site has been very helpful in educating medical personnel about this illness, they seem to know so little. I bring copies of information from your site whenever my husband (diagnosed 1997)is hospitalized for any reason or encounters a new physician. Thank you!

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Yolandi Lakes 2/21/2003

My dad has arachnoiditis because of treatment he received in the early 1970's. I am pleased to see that there is so much being done to bring this to the attention of the rest of the world. I think it is imperative that the suffering of these people are heard. The neglect of these greedy pharmaceutical companies has robbed my dad of an active and happy life. Keep the fight going!

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mike grant 2/19/2003

to all archies, never give up the fight for pain, always remember you have people working for you all,like kim, and kathy, what more could you ask for. I always light a candle for everyone.regards from mad mike the mersey mouth.xx

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Keith Campsall 2/11/2003

God it hurts!

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lucy may horobin lucy 2/9/2003

hi mike hope all is well, pleased you were able to get a diagnosis. a lady phoned me last Saturday to say she was diagnosed, i felt so very humble that she had phoned me first, doesn't it give hope to the coming years that the g.p.s are taking note, that some consultants are listening, and reading the info we pass

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Marsha Gullett 2/7/2003

Im a 33yr old female hurt my back at work dr. says i have bulging, deteriorated, and degenerative disks. I've taken steroids done physical therapy and now starting the epidural steroid injections just had my first one i feel im getting worse instead of better. I would like answers to many questions will this problem get better can it, or am i always going to be in pain. I would really like some information on this

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Kerry 1/27/2003

I have had this devil wandering my body for 9 yrs. to many surgeries & experiments... was sent to Stanford University Medical Hospital in California. just had a Intrathecal Pump (Medtronics) put in, By God my prayers were answered & I can walk -- pain is much more tolerable & diminished.. Great doctors! Luck to all of you This woman found just a little bit of peace Kerry Central California, USA

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Joe Kramer 1/25/2003

MY NAME IS JOE I suffer from adhesive arachnoiditis I AM FROM CLEVELAND OHIO AND I SURE COULD USE SOME HELP AND SUPPORT IT WOULD HELP TO TALK TO SOMEONE INSTEAD OF GOING IT ALL BY MYSELF IT CAN BE VERY OVERWHELMING AT TIMES.

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sherry edwards sherry 1/17/2003

need to know ASAP/URGENT if this can be caused by a simple strain of the back?

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Unni 1/15/2003

Hi, I think I have arachnoiditis, I am diagnosed with CES-Cauda Equina Syndrome, many CES-people has Arach as well. I have had good reasons (risks) for getting it, and I have a lot of the symptoms of Arach. I want to get a diagnose, what kind of specialist will I have to go to? I have fusions from L3-S1 and Laminectomy in the same area, I have had Myleography and many injections without fluoroscopy, I am a member of the CESSG (support group)

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Unni Gjølga 1/15/2003

I think I have Arachnoiditis, I am diagnosed with CES and I have read a lot about Arach, and I know that I have experienced the risks of how to get it, and I have a lot of the symptoms. What specialist do I get the diagnosis from, a neurosurgeon? I have had fusions from L3-S1 and Laminectomy in the same area, I have had myleography and a lot of injections without using a fluoroscopy.

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Kim Sharpington 1/10/2003

Made interesting reading. My mother died in 2000 with extreme back pain which they could not seem to control. She had two discs removed 7yrs previous and developed a strange unidentified shadow in her lungs in 1998. I was told she had developed a muscle wasting disease! I hope you are not in too much pain.

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eddie murphy 1/2/2003

always look on the bright side

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Freddie Lytle Arachnoiditis Foundation of Am 12/30/2002

I love your site. Well as you probably know by now we have just begun our work on the Foundation for the US. Please give us a while and our site will be a whole lot better. We are here to help anyone with Arachnoiditis, anywhere. So if I or any of my staff can be of assistance please let me know. Thank you. sincerely, FREDDIE LYTLE PRESIDENT ARACHNOIDITIS FOUNDATION OF AMERICA(AFA)

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LINDA INGLETT 12/15/2002

Mike the page is beautiful, tell Jude Thanks, please give me a call or send me your address for me to send you a song. Then you can try to put a part of it on the page, just enough so someone can hear it then maybe they will order it. I am so mad at my congressman right now. I wish you had a fax so I could send you his letter he wrote me , which I asked him for help . Wait til you hear what Ninds wrote, I need some advise on this to write back Linda Inglett have a new grand baby boy...born

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Nancy 12/2/2002

Sorry Mike for not leaving a message last time. I have been disabled for over 20yrs. I am only able to lie on my side as sitting or standing for any length of time is agony. I am lucky I can manage to shower and use the toilet. My worst time is having a shower as the pain is so bad. I am also lucky I was born with a good sense of humour as laughing does make life worth living. I am now 73 yrs old and I will never let them touch my back again. I hope that it is not too late for others though.

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Nancy 11/30/2002

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Kim Hilty 11/27/2002

great site.thank you.i am certain my mother has this after botched epidural. she has had two back surgeries and other epidurals but this last one was a killer and she has been in severe,excruciating pain that is radiating through her body for three months now since the day she had it.doctors don't want to deal with it. OK, I've vented. thanks. kim,PA USA

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Laura L. Whismore 11/12/2002

I have been diagnosed with "Arachnoiditis" I am trying to find any and as much information on this as I can. I'm scared, I want to try to understand what is happening to me.

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Cynthia Knott 11/8/2002

Had a look and feel encouraged. Thanks!! Cynthia

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charmiane poulton 11/1/2002

I'm in China, with an "attack" of arachnoiditis from too many steps, and cant get any pain killers; these lovely people just keep giving me herbal medicine, which is like swatting a fly with holey hankie. What do I do? Maybe I'll just fly home and give it all up, but what a waste. But you know what its like, too much pain makes anyone a very dull person.

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Tammie Hamilton 10/28/2002

I was diagnosed with this disease 1 year ago. I have had 2 back surgeries and numeral steroid injections, as well as the mylogram injection. We are not sure which procedure caused the problem. My neurologist is useless, he diagnosed me, and just prescribed me 1 years worth of pain medication, and said there is nothing more that could be done. I would love any and all information possible regarding this disease. I have a 5 year old son, and had wanted more children, but the pain that I expie

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Shelley Attaway 10/23/2002

I was diagnosed on October 22,2002 with ARC. I am very relieved that it has a name. They were fixing to do another surgery(I have had 6 this year)The good part is a don't have to have another surgery, bad part is the is no cure. I would like any information you have on this subject. Thank You, Shelley

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Gill 10/21/2002

Hi Everyone. I hope you are finding this wonderful site Mike and Jude have put together educating. I have learnt more from this fantastic guy in a year, than I have ever learnt from the Medical Profession. I am just another undiagnosed person waiting for the day someone tells me this pain is not in my head. If there is anyone in the UK that has been diagnosed with Arachnoiditis, I would be very grateful to know, by Whom and Where. I would be very grateful if you could e-mail me to let me know

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Debi Martinez 10/15/2002

I'm totally lost. I just received the "official" diagnosis of arachnoiditis. In a way, it was a relief that my symptoms really weren't in my head, but knowing that my disease will progress and become potentially disabling is something i cannot deal with. I'm an mother of 3 active teenagers, I'm an RN, and I'm not ready to "give up". But there are days I cannot even get out of bed because of the pain. Now comes the difficult part of explaining to my family the poor prognosis of this disease. I'm

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Michael Howell Arachnoiditis.net 10/10/2002

Mike and Jude, Love the site and the information you provide. I know that, with all of the work we are doing to fight ARC, the time and effort are worth it even if we help only one person. My prayer is that those that suffer as we do find hope, love, friendship and the information they seek in these pages. Keep up the good work! Michael Howell, California, USA

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Kayte Clater 10/9/2002

Please, Please can someone tell me WHY IS IT THAT THIS "HORRIFIC" CONDITION IS GIVEN LITTLE OR "NO" CONSIDERATION IN THE USA ?????? THIS IS A "HUGE" PROBLEM IN THE USA, AS WELL, AS THERE ARE MANY WHO HAVE BEEN UNFORTUNATE ENOUGH TO END UP IN THIS PREDICAMENT, IN LARGE PART, BECAUSE OF "BAD JUDGEMENT" OF NEUROSURGEONS WHO TOOK THE OATH TO "FIRST,DO NO HARM!" ANY SUGGESTIONS OUT THERE ????? KAYTE from KENTUCKY

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Derek CIAASA 10/8/2002

'I know that most men can seldom accept even the most obvious truth if it would oblige them to admit the falsity of conclusions which they proudly taught to others, and which they have woven, thread by thread, into the fabric of their lives'. (Source Unknown) Keep up the go work from all of us in Australia. Rev up the bus Mike. Derek AUSSIE REDBACK

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Jodi 10/6/2002

Hi, I just got diagnosed Fri. with arachnoiditis. I've been having problems since May 01. I've had 3 back surgeries and numerous epidural and block injections with no relief. Finally someone told me what was going on. It was a shock because I'm the breadwinner in our family, my husband is retired/disabled he is on a pancreas transplant list, doctors said if he doesn't get the transplant soon, he will die. We also have an 8 yr old. It's very hard for me to take care of everything but I have to. T

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Chaz 10/5/2002

Hi There, Thanks very much for all the hard work you have put in to making this site available for sufferers like me. Keep up the good work. Chaz

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Drew ChangingLINKS.com 9/23/2002

love your site! Do you know of some links with entertainment, humor, fun? We link to sites with new information and entertainment. please visit http://www.ChangingLINKS.com suggest a site.

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David Davis 9/21/2002

Hello, Just trying to find more information about arachnoitis. I've had 38 needles in my spine over the last 20 years. thanks much David

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sara Bored? 9/15/2002

A very helpful and informative site. Thanks to all who have made it possible.

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Paula Handley Paula Handley 8/2/2002

I have lived with back pain for as long as I can remember. It is my whole back, not just one location. I have fibromyalagy, and other problems as well. My sister-in-law alerted me to this problem of arachnoiditis. I want more information on what this is and why Doctors don't want to talk about it. Thank you for any information you may submit. Paula

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Stephanie 6/27/2002

Thanks, Mike, for answering so soon. I wrote too much and was abruptly stopped in mid-story. Don't know how to continue in this venue. Any words of hope would be appreciated from anyone. The bridge sometimes, looks very tempting to me. Since I am not a good swimmer and am afraid of heights,any strength that can be passed on to me, I will gladly accept. Please, no mention of bridge in your reply. It tends to upset my loved ones.

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Carole Ringham 6/25/2002

Hello Mike - An angel who I first spoke with in May of 2001. He has been an inspiration and a prophet. It is thanks to Mike, Isabel and Carl that I now will not stand for any non-sense when I get a diagnosis of Fibromyalgia and I know that it was just to shut me up and get me out of this so-called doctor's office. No more will I be misinformed. Now I ask, what will it do, what are the side effects, what are the success rates - then and only then will I say NO. No way are you coming near my back with any needles. Thanks Mike and Jude for being there for me. Mike don't let the trouser leg fall out with you shoe again!! (See Arachnoidits video - Fighting Back to see what I mean). Sorry Mike had to get that one in. Love the site, may it go from strength to strength

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Jacquie Douthwaite Jacqueline 6/23/2002

Thankyou so much Mike for all your help. I am more than grateful for all the information and insight into this terrible affliction. Instead of rummaging around in the dark, you have helped point me in the right direction. Thanks again - Jacqueline.

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Stephanie Albert 6/22/2002

I am a 60 year old married female, diagnosed with adhesive arachnoiditis twelve years ago. I have had five mylograms and three laminectomies. It was not until my fifth myleogram twelve years ago, that I was told that I have arach. and told bluntly that there was no hope of help for me, other then pain medication. I am now on Morphine and Roxicet. They no longer work and I am interested in learning about pain relief. When first diagnosed, I delved into any information available on this horrid disease.

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Marni Goulding 6/14/2002

I have been dealing with Adhesive Arachnoiditis for over twelve years and it was just diagnosed two years ago. Before I was diagnosed I was given no answers, no pain relief and a lot of doctors telling me that it was all in my head. I am grateful that more and more people are becoming aware of this very misunderstood and under-treated condition. We need to raise money for research and find a cure! I really do believe that we can do it!

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Tracey Holden 6/10/2002

Hi, I am the press officer for The Arachnoiditis Trust UK and I wanted to just say hello. I am going to try to get the video advertised in local papers up and down the country. Best wishes to all Tracey Holden

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roger radford 6/6/2002

God Bless, Mike. With you all the way. Best wishes Roger Radford Ps I'd like to lift a couple of paras from your site for my new novel, Informed Consent. Your eloquence would suit one of the protagonists very well. Is that okay, mate?

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Sallie Anthony Sallie 5/28/2002

I had a spinal fusion January 2001 and since then have had a burning left foot and spasms in my leg. I have been told I have sympathetic nerve mediated pain. I have seen 3 pain consultants and the last one thought that i may have CRPS type 2 but as i don't have all the symptoms of that I am not so sure. I have just heard about Arachnoiditis and I wonder if this is what I have.

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lucy horobin 5/12/2002

hello mike we spoke on the phone last week! I was diagnosed in 1978 but was not told until 1995!the arachnoiditis trust as been a life saver for me. it is amazing how many are suffering with this evil disease.your storey is about the same as mine.it is very demeaning how we are all treat by the medical profession, anyone who wants to chat can email me.

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CathieArceneaux 5/12/2002

Diagnosed with Arach and going to educate myself and my primary physician since he does not seem to have any answers for me.

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Tina Stapleton 4/23/2002

Just diagnosed in Feb-2002. Now what do I do?

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suzanne donny blue_for_uuk 4/19/2002

hi,i need help here im in a group from America that have been great help but nothing from uk.have so much to ask about any help here.i have suffered now for more than 10 yrs with this pain,burning,cramps,you name it,im saw you know.was with main manager been closed due to the n.h.s cut.hope to hear and a little help would be great.thank you .suzanne

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