Arachnoiditis Looking For Friends

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Ref	Name	Age	Male	Female	UK +	Comments
x	Ursula	47	x	x	Leicestershire	Hi Ursula here, I would like to invite fellow ARC's to get in touch, and or join our support & self help group, we meet once a month at a local hospital or sometimes at my home, anyone is welcome. For more details please e-mail me, Mike knows who I am & that we are all here to support each other. Look forward to hearing from you. All the best Ursula.
5	David	x	x	x0	Gosport Hants	since having chemonucleosis i have suffered more, i have not been diagnosed with arc but the more i read the more i feel this is what my problem is.
7	Douglas	55	x	x	Wrexham	I have a spinal tumor which was operated on 25 years ago, it couldn't be removed as is is in the spinal chord. Seven years later I was diagnosed with Arachnoiditis and have been fighting and winning ever since. I now build motorcycles for therapy, but still get my bad days. Anyone wishing to contact me, please feel free to do so
8	*Julie	39	x	x	AUSTRALIA	I suffer from Arachnoiditis and I collapse a lot Does any one else have this problem?
11	Graham	29	x	x	Oldham	"It won't happen to me" is a common phrase used by most of us,me included. Unfortunately,like most of you,I am in tremendous chronic pain day in,day out.And so it was a difficult moment for me recently when I had to retire from the job I loved on the grounds of ill-health.And at the age of 29 too.
16	Gillian	x	ox	x	London
19	David	43	x	x	West Sussex	Not yet diagnosed but showing many symptoms ~ did suffer multiple ESI with Depo & Kenalog in mid '90's and heading downhill since!
23	Sue	35	x	x	Hampshire	I have suffered for nearly eight years nobody seems to understand who i feel and i am still no formally diagnosed but they have said it but not willing to admit it officially so i left in no mans land i would like to talk to other suffers please I live on constant morphine know and i would like to hear form anyone out there
24	Gill	35	0x	x	West Sussex	I hurt my back at work in 1993, I had an Epidural and Water based Myelogram and then became ill in Jan 01.I am still fighting for a diagnosis. I am a mother to two young girls.
25	Rhian	30	0x	x	Swansea	had a epidural injection during labour and it was inserted in correctively twice during this i felt a pain never felt before as the needle touched something in my back then it was done a third time by the consultant and it was done right. When i was blocked i was only numb on one side my other i felt everything. After i was released from hospital in 20 hours i had a very very bad headache in which i also experienced a frightening thing as to which i was very scared and anxious this followed with me being ill for a few months with numerous different antibiotics, this was three years ago now i had a mri june this year in which they said i have a form of arthritis in the spine and they can only give me pain relievers it cannot be helped by surgery. I have all the symptoms of arachnoiditis and suffer immensely with this i sometimes feel like going to sleep and not waking as it is crippling and i feel like someone else i haven't had no help off the medical profession and i have been made to feel very awkward as if i am making it up. Untill the mri i had been so confused and lost. I am still not happy as i am on tramadol and paracetomol and i am still in pain i don't get any help in any way i was once a very fit lady i have 5 children in which i have remained fit after all of them the way i am feeling is confusing for me as people say to me (doctors) its wear and tear from the children and arthritis but it is more than that also no-one in my family ever suffered from arthritis i am in need of help
27	*Ann	60	x	x	Plymouth
28	Les	76	x	x	Hove East Sussex	Confined to wheelchair,almost paralysed below the belt interest in music, clocks
33	Lorna	40	00x	x	Durham	x
34	Vivienne	48	00x	x	Oxford	x
39	Lorraine	39	00x	x	Stirlingshire Scotland	I may have this illness can anyone tell me how there doctor diagnosed you i have had back pain for 17 years mri scan on lower spine and brain scan (results no nerve root compression) this was one year ago. Have been to doctor about a puncture mark on lower spine possibly from an epidural, doctor wrote to neurologist who without examining me stated that i had no symptoms from investigations that this could be an epidural abscess believe i am being misled by this and the consultant is not willing to see me before my next normal appointment agreed which is January. I believe the symptoms i have could be an epidural abscess can anyone with an experience similar to this e-mail me with suggestions how to proceed.
44	Lee	48	0x	x	South Africa	On morphine suffered for many years. No real help or understanding in this country - at my wits end - feel totally alone
46	Allan	50	x	x	Brisbane Australia	Hi fellow sufferers. I had an accident when I was 18 and had 2 Myelograms using Myodil. Gradually over the years I have had increasing Spinal Pain and fit the symptomatic picture of Arachnoiditis perfectly but have not been officially diagnosed. At present I lecture Natural Medicine at the Australian College of Natural Medicine in Brisbane, Australia and have all the usual difficulties in everyday life. I pray for relief without drugs and hold onto the hope that one day I'll receive it. Hoping relief for all others suffering any pain from any condition.
47	*Christina	45	0x	x	AUSTRALIA Gold Coast	Hi, I have 4 children,married ,in constant pain!! My GP doesn't recognise that I may have adhesive Arachnoiditis. Love to go out ...but cant. Feel the same???
48	Clothilde	47	0x	x	London	Have been suffering since 1996, diagnosed 1997. Tried physio, oesteopathy, kyropractice,acu-puncture. You name it I've tried it. I have yet to meet anyone else suffering like me, just to talk. I am getting so desparate that I am considering a neuro-block but don't know how good/bad it would be. Has anybody tried this?
50	*Paul	29	x	0x	Halifax/Work & Home is North Wales	Suffered Cronic Back Pain for a number of years. I have now to make a decision on whether to have a Lumbar Epidural to manage the problem. I get the impression that nobody realy knows how to treat me.
54	Ilse Renate	60	0x	x	London	Slipped on ice in1972, fractured spine in 7 places. 1973 had CHYMODIACTIN (CHYMOPAPAIN), 1976 MYODIL MYELOGRAM, followed by a frontal double spinal fusion one fusion unsuccessful. 1977 another MYODIL MYELOGRAM followed by a LAMINECTOMY, all performed in Hong Kong. 1981 in Innsbruck Austria, another LAMINECTOMY AND DECOMPRESSION OF THE NERVE ROOTS. 1985 in Houston, Texas a waterbased MYELOGRAM showed EXTENSIVE ARACHNOIDITIS,plus all sorts of abnormalities of the nerve roots in the lower lumber area. CT scan showed a very large ventral mass at L5 - S1.From 1991-1993 had 5 epidurels and 3 facet joint blocks for "pain management". 1993 injured my neck in my sleep needed bone graft using sea corral. Would like to meet with other sufferers in London.
55	Barrie	57	x	x0	Nottingham	Due to a spinal injury whilst in the armed forces I had to have a spinal fusion of L4 to S1 in 1976 only to be followed by 2 spinal decompression operations and ten years of Epidurals. All this only to be told 4 years ago that I had arachnoiditis. What next ?
56	Charles	64	x	xx	England	War disabled since the age of 21
58	Janie	42	x	x	Cambridge	I am a 42 year old housewife and have only just been told i have arachnoiditis but was dognosed in 1992 and it was kept from me?
59	Jean	60	x	x	Lancashire	My husband has Arachnoiditis and I would like contact with other wives in this position, or other lady suffers. My husband has suffered for the last 40 years after leaving the Army with a back injury.
60	Steve	18	x	x	Great Yarmouth	Still awaiting a diagnosis - my GP suspects i have the disease as a result of a hospital doctor screwing up a lumbar puncture in november 2002 when i was rushed in with Meningitis. I'm worried and dont know how I will cope.
64	Rainer	47	x	x	South Wales	I have been a proffesional horse groom since leaving school am now retired due to back problems and have to wonderful children age 7 and 3
69	Mark	x	x	x	SOUTH AFRICA	Would like to hear from all South Africans with Arachnoiditis. Phone number on request.
70	Wendy	x	x	x	AUSTRALIA VICTORIA	spina bifida. diagnosed arachnoiditis in 1999 after 3 major ops on spine Looking for support from fellow sufferers
72	Kris	42	x	x	AUSTRALIA New South Wales	Mother of two children 3and 8 and have been diagnosed with arachnoiditis and now spend my life in a wheelchair need others to talk to.
73	Judith	47	x	x	x	just been diagnosed with arch, relieved in one way but worried of out come in another, had several accidents with injury to back birth epidural, steroid injct` nothing worked only pain managment programe and amitripelin, and the occasional wisky. dead glad to here there are other sufferers, did think i had cancerous tumours in my back at one time it was that bad, but once again glad the doctors agree with my diagnosis, and all my arch symtoms
76	Rob	53	x	x	Worthing West Sussex	My condition started in 1981 when injected with Myelogram dye, undiagnosed until 1999. As you know it's hell living with Arachnoiditis. I have been getting great relief from my problems by using cannabis this has helped a great deal I have reduced the amount of pharmaceutical medication and use only cannabis and morphine in small amounts. I have written about cannabis and appeared in several articles for the disabled. Please write to me I am like most of you in terrible pain. And spend a lot of time on my own. If you would like to correspond please email me.
77	David	57	x	x	West Auckland ,Co Durham	Diagnosed with Myodil-induced Arachnoiditis in 1994 by Consultant Neurologist Dr.John Oxbury Radcliffe Infirmary Oxford.Was part of the class action against Glaxo but unable to continue action due to an up front payment of £30,000 required.Unable to receive Legal Aid because of my meagre savings People who were entitled to legal aid did receive compensation. I feel angry and disillusioned by the whole episode
79	Margaret	53	x	x	Scotland	Convinced I have aracnoiditis after birth epidural with delayed onset of dramatic symptoms 7 years after epidural. Worst of symptoms peaked years ago when I could hardly walk but continue to have chronic pain low back & burning feet legs and lymphatic sites also digestive problems. Doctor treats each symptom as a separate condition and laughs off suggestion that symptoms are connected. Medical records show Somatization disorder! Can anyone who has already been diagnosed advise on how to approach doctors?
80	Ana-Alicia	17	x	x	x	I love playing the saxophone, piano and singing
81	Theresa	54	x	x	IRELAND	Had 1st Mylogram 1975. Very severe reaction about one hour hater. It was 19 yrs of hell until I was diagnosed in 1993. Have had 4 for Laminectomeis the last which was on 1at Dec 2003. Would love to talk with someone else, it is so lonely not knowing anyone with arach.
82	Elayne	47	x	x	Gosport, Hampshire	in '93 i suffered domestic violence which collapsed discs in my lower spine, i had an emergency operation nov '93 i started getting very strange pain and symptoms and so a lumbar epidural was done with methylprednisolone. i also suffered a "spinal tap" because i atrainee had actually tried to insert the epidural. after i had this, i got very much worse, i was referred for scans and a further epidural. which made things even wrose, i now have been diagnosed with adhesive arachnoiditis, spinal arthritis and degenerative spinal disease, i have been on ALL drugs from paracetamol to morphine and cannibis, and nothing works, so i dont take drugs anymore, i use self hypnosis. my main problem is, that although i have this disease (and i have one numb leg, and going paralysed, hearing affected and sight affected, DLA saw fit to stop my benefits, it seems there just isn't any help. but, if i can help anyone, i will try.
83	Vivienne	42	x	x	Wales	Spinal anaesthetic didn't work properly during caesarian. Severe pain and couldn't walk afterwards. Taken 13 years to get as good as I am now - still in a lot of pain top to bottom with other relevant symptoms eg bowel, burning feet and post traumatic stress. Spent loads of money on osteopath, massage, spiritual healing and now homeopath to get me this far. Good job I've got an office job - cannot do housework
85	Tracy	36	x	x	x	I suffered a burst fracture to L5 in 1998 and as a result of surgery I am now suffering from Arachnoiditis. I try to manage the pain as well as possible and try not to let it interfere with my life (easier said than done).
92	John	59	x	x	AUSTRALIA Hunter Valley	had spinal ops and myleograms with mydil in the 70's. Now getting effects that point to Arachnoiditis. Just started tests to check for alternative problem have a range of problems from headaches, electric shocks, fatique,falling over etc etc. would like to converse with some one about the problem
93	Gretha	46	x	x	SOUTH AFRICA	Married with 4 children.Would like to communicate and share with.I experience no support and understanding.
103	Alison	41	x	x	Herefordshire	Lonely sufferer feeling as though my world has fallen apart. Previously active outdoor person into horses and the countryside big time. Any fellow sufferers in my area I could talk to?
115	Elizabeth	56	x	x	South Africa	I had a midline myelotomy in 1993, diagnosed with arachnoiditis and all the complications. A dorsal column nerve stimulator was implanted in May, total rejection of it and had to be removed. In agony at the moment!
121	Margaret	55	x	x	Cornwall	used to be a nurse but injured back 1974.developed signs of what I now know to be arachnoiditis in 1998. Had spinal cord stimulator implanted nov 2003 with good result!despite being in electric wheelchair enjoy playing in a brass band at different venues around the country
122	Bob	49	x	xxx	Australia	I was blown up in N. Ireland in 1974 and had 3 myelograms. After 10+ ops I am now house and wheelchair bound. I find it difficult differentiating between reality and the hallucinations I attempted suicide twice because of the pain. Justifying suicide is easy, carrying it out was problematical for me. To hell with Glaxo!
123	Kim	39	x	x	London	i was diagnosed with fibromyalgia syndrome in 1996 still trying to get my rheumatologist to give me the correct mri scan!
129	Christine	55	x	x	Brighton	LIKE TO HEAR FROM ANYONE WITH SPINAL STENOSIS LUMBAR AND CERVICAL NEWLY DIAGNOSED WAITING FOR SURGERY HOW DO U COPE WITH THE PAIN

Ref	Name	Age	Male	Female	UK +	Comments

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