Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Hi , Well what a dissapointment todays visit to the hospital was.... well the good news is that they a) had my file, and had some results, however, c) a diagnosis is turning out to be a bit of a problem. Mr Surray, Gyneacologist, is referring me to a Rheumatologist, as he has no idea what the symptoms and results are signifiying and if its anything serious.... splendid chap. However, he did do an exam, and is happy that the gynea related symptoms have cleared up nicely, although I have some scarring. I'm seeing my own doctor tomorrow for a follow up chat, and will let you know what he says. I expect that he'll let me go back to work on Thursday (after five weeks off) and see how I get on, Take care, > > > > Dear , > > On behalf of all our members, welcome to our Erythema Nodosum Group! > > > > Thanks for sending in your Questionnaire. I have added the > information > > to our " Member Medical History " Files on the Group site and > > posted it below. > > > > You now have Full EN Group privileges. > > > > You are receiving Special Notices EN Group emails, and you can also > go > > to the > > > > Erythema Nodosum Group Site > > <http://health.groups.yahoo.com/group/erythema_nodosum_Group/> : > > > > http://health.groups.yahoo.com/group/erythema_nodosum_Group/ > > > > > > whenever you like and logging on with your Yahoo ID and secret > password. > > > > > > I'm not medically trained, but when you mentioned the gential > ulcers I > > immediately thought of possible > > Behcet's Disease > <http://www.ninds.nih.gov/disorders/behcet/behcet.htm> > > or > > Herpes > > <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? > cmd=Retrieve & db=PubMed & li\ > > st_uids=12735641 & dopt=Abstract> > > > > Click on the words above to read about them and their connection to > EN. > > Perhaps you could mention these to your dr. if s/he is stumped > when you > > visit on the 16th. Please let us know what your doctor says. > > > > Thanks for sending your photo! I made an > > album for you > > > <http://health.ph.groups.yahoo.com/group/erythema_nodosum_Group/photos > /b\ > > rowse/7094?c=> . > > You can also add other photos to it at the Group site. > > > > I hope you feel much better very soon, and again, Welcome to our > > Friendly Group! > > Love, > > > > > > ****** > > > > 1. Your name and age : Fazackerley, Female, 32 years > old. > > > > 1. Your Location : Preston, Lancashire, UK > > > > 1. Your email address : linfaz@ > > <http://us.f324.mail.yahoo.com/ym/Compose?To=linfaz@> > > > > 1. Your Yahoo ID : lindsayfazackerley > > > > 1. Describe your erythema nodosum/PG symptoms, or, if you do > not have > > EN or PG, please explain why you wish to join this group. > > > > The symptoms started on Good Friday (April 2006), I woke up feeling > > really tired and achey, and the joints in my legs were sore, > walking was > > close to painful. When I looked in the mirror I found I had a really > > good collection of large acne like spots on my face! > > > > On the Saturday, the joint pain in my legs was getting worse, and > the > > spots had progressed to my chest. I had a fever and felt very cold > and I > > was also having excruciating earache. I thought I was coming down > with > > `flu, as I had no appetite at all and everything ached; I called my > > parents to let them know I was unwell and to ask for some soda's > > with sugar (I only ever drink caffeine free diet!), as I couldn't > > eat. I didn't sleep at all that night, as the pain in my legs (even > > with pain relief) was unbearable. > > > > On the Sunday I felt worse, and was in so much pain (in my ears and > > legs; especially my right knee) that I could hardly walk. > > > > On the Monday, after another sleepless night, I called my Dad and > asked > > him to take me to the emergency doctor in Euxton. On top of > everything > > else I had developed large (2-3 cm) red lumps on my legs that were > > tender to touch. The doctor told me I had flu, and gave me some > > antibiotics (erythromiacin?); I wasn't at all convinced!!! > > > > A couple of hours after getting home I noticed a pain and wetness > > between my legs; I went to investigate and found what I thought was > a > > genital ulcer and it was bleeding. I rang the emergency doctors > back, > > and he advised me to come back for another examination. > > > > However, I called my best friend (her husband used to be a > nurse), > > and I asked them to come over. He had a quick look at my legs and > told > > me that we had to go to the hospital. > > > > I was examined by 9 doctors, spent three days in hospital, had my > legs > > photographed, a chest and hip x-ray, and lots and lots of blood > tests. > > Whilst in hospital I developed a mouth ulcer, and night sweats. I > was > > told I had an " acute viral infection, with associated skin > > rashes " . On discharge, and was given 100 paracetamol and 100 > > anti-inflammatories to take home. > > > > However, I was very concerned about the genital ulcer, and it was > > getting bigger, and appeared to be discharging, although they didn't > > seem too concerned about that! > > > > Once I got home I rang NHS Direct (UK Health Service Phone Line > staffed > > by nurses, who answer non-critical health enquiries), to get some > advice > > about managing the ulcer myself. The nurse was very unhappy about my > > symptoms, and in particular the gynaecological aspects (as I had not > > been examined at all by a gynaecologist), and contacted a local > > emergency doctor to discuss my case. > > > > After advising her of my symptoms the emergency doctor asked me to > go to > > the emergency surgery in Euxton (again) for immediate examination! > > > > As soon as she saw my legs, she said " that's not a rash, > > that's EN " ! She went on to examine me, and felt that it was > > urgent I saw a Gynaecologist as she was certain I also had > ulcerations > > on my cervix. > > > > She rang the hospital, wrote me a referral letter, and off I went > again! > > After answering lots of questions, and undergoing another > examination, > > the hospital have revised their initial diagnosis, to " papules on > > face, mouth, chest, vulva and possibly cervix, also EN. AI Disease? " > > > > I have since seen my GP who believes that this is most likely, and > has > > signed me off work until after I get my first set of results back. > > > > The lumps, spots and ulcer have all but cleared up, and I feel a lot > > better in myself, although I am concerned about the possible > diagnosis. > > However I still feel very fatigued – from reading other cases, this > > appears to be common. > > > > I am seeing a gynaecologist on the 16th May at 14:15 GMT to discuss > the > > blood tests and swab results. I am hoping that it is nothing too > > serious! > > > > 1. List any other health conditions. > > > > The main medical conditions I have been dealt are……. > > > > Bells Palsy (1998, 1999) > > > > Endometriosis (2000 onwards) > > > > Cervical CIN3 (2004 – treated) > > > > 1. State what medications or treatments you take for EN, and > their > > effectiveness: > > > > I was prescribed paracetamol to keep my temperature down and for > pain > > relief, and anti-inflammatories for the joint pain – I found that > > they helped (in hospital doses)!. > > > > I also found that if I did exercise my legs they became more achey, > so I > > have had to build this up gradually over the last three weeks. > > > > 1. When did you first get erythema nodosum or PG? > > > > April 2006 > > > > 1. How long have you had erythema nodosum or PG? > > > > One Month > > > > 1. Do you agree to treat all EN members with respect? > > > > Absolutely > > > > 1. Do you agree to post NO advertisements for any products or > > services? > > > > Yes > > > > 1. How did you find this group? (Google, Yahoo, Ask Jeeves > Search, > > referral from another group or person etc.) > > > > Google > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2006 Report Share Posted May 16, 2006 Hi ,Don't be too disappointed, as these rare disorders are often difficult to diagnose. They don't have specific tests for many of them and often have to eliminate disorders or count symptoms: Like a Chinese Restaurant Menu where if you have two from column A and one from column B you have a possible diagnosis, but with three from Column A and one from Column B you have a probable diagnosis. Anyway, Good Luck at the rheumy and let us know how you fare at work.I'd advise to take it as easy as you can, and rest as much at home as possible.Love, Quote Link to comment Share on other sites More sharing options...
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