I have had SLE for the last 9 years, in varying degrees, from loosing the use of my legs completely to having weeping sores and open ulcers from head to toe. However this time it appears to be taking a different form.
2 months ago i was admitted to hopsital with pneumonia and spent 3 weeks in there trying to shake it. Was told that I have COPD now but waiting to see a specialist still. I have asked my GP, almost begged them to refer me to Louise Coote for further diagnosis etc and management but was dismissed by them saying to me, after i told them about this site that I should ask people the most effective drug and then go back to the GP and ask to try those relevant drugs. The term GUINEA PIG springs to mind!!!!
And yesterday I woke up feeling very strange, awful pains in my head, neck and shoulders and throwing up each time i moved. Put up with it until 2pm today when i called NHS direct and was told to ring for an ambulance as i now had bad pains thru my chest and shoulder blades. I opted to go see the on call dr who told me i have an ear infection, even given all my previous illnesses and symptons.
I have spent the rest of the day crying......and so low, so fed up, and feel so alone today.
Written by
MandieR
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sorry to hear your so poorly sending possative thoughs your way it really does sound crap at the moment. could you afford to pay privately as a one off and then get swapped to the NHS system.
or is it worth swapping gps to find some a bit more sympathetic?
That is so familiar. Regular GP's do not know about Lupus as its a ''specialist illness'' Well that's what i'm told anyway, My GP does everything but pat me on the head after he has made me feel like i am a hypercondract and wasting their time. It is a lonely illness that makes your moods all over the place. Go into your surgery and DEMAND you are refereed to who YOU need to be. That is exactly what i am going to this week. If i have to sit there all day i will. I am fed up with feeling like an inconvenience and like i dont matter. I have two kids to look after ( well 17 and 14 ) but they still need me.
Keep your chin up sweet... and keep us informed xxx Hugs and positive thoughts coming your way xxx
Oh Mandie this is awful for you. Is there another gp that you could see in the practice? You have a right to be seen by a lupus specialist. I would tell your gp that you intend to make a formal complaint about him and mention that you should not be prescribed medication for lupus based on a lupus forum and what they are taking. I would also get in touch with your local primary care trust and complain. If none of this works and I would be suprised if it didn't change your gp practice. I am so sorry that you are having to go through all of this. Try and stay positive because once you are seen at the Louise Coote centre you willl feel an awful lot better.
very sorry to hear you are so unwel dont give up the fight i dont think gp understand a lot about lupus i am a lot of trouble with my legs alot of pain when i walk . the gp just dont want to know just say it will wear of but it as not yet so there is alot of us out going through the same so keep your chin up and keep fighting lots of hugs xx
I got told, well you have got a connective tissue disorder what do you expect?
That really helps. I suppose i am lucky as i work in a hospital and i am medically trained but even then paying to see my consultant it is all trial and error especially as everything i suffer from is quite mild after reading how other people suffer.
I hope you keep complaining and try and keep your spirits up.
Hi Mandie,so sorry that you feel this way.Your experience is same here,since I was diagnosed iIve being through GPs' but my latest is the worst,although improving now.Just like some responses above you need to find one that understands you and is also willing to learn from your experiences of your health perception and provide you with the necessary care and support .I hope you do feel better and good luck
Hi. You need Dr D'Cruz at St Thomas Hospital, Lupus Clinic. It took me until kidney faliure to get referred but I managed it. The new NHS system allows you to choose where you would like to be treated if possible, remind your Dr of this and ask to be referred to him. He is one of the best Lupus consultants in the country and is my consultant.
have a look at our support website run by my daughter for kids and carers of Lupus, they are useful people to know. WWW.beat the butterfly.com
Oh, this makes me so angry. Sorry, but you need to fight, and you probably don't have the energy to do so if you feel rough. I had the most rubbish rheumatologist for ages and then I gave up and had a private appt with Dr D'Cruz (St Thomas') and he diagnosed me immediately and then got me back on the NHS (thank God as I couldn't afford otherwise).
my story starts in 1980 i was 20 at the time after having a couple of faints after a visit to the hospital i was diagnosed with having border line epilepsy but i was told this could be controlled by drugs and i was given a drug called tegretol a few days after taking this i had a fit then i stated having fits everyday so i went back to the doctors and he added a drug called epilem yet again the fits increased again so i went back again as the fits increased i was being prescribed more and more drugs this went on for
10 years by 1989 i was having about 20 t0 40 seizures daily and i was taking about 15 anticonvulsants a day which were tegretol, epilem, clobazam vigabatrin and epanutin and all these were quite high in doseage and i took them all together every day by this time i was feeling very ill and also suicidal because i could see no way out of having these seizures and taking all this medication, at the end of 1990 i was taken to see a very good specailist in this field who admiited me into his hosptal which by now i had been to 5 different hospitals for tests whilst i was in there i felt really unwell and was sent for yet another eeg,
i had tests then one afternoon he came to see me and said i have already
spoke to your parents and what i am going to tell you will be a shock at this time i thought they had found brain tumours or something serious like that but he words i will never forget to this day he told me i hadnt got
epilepsy and the drugs i had taken had induced all the seizure i had suffered
he also told me i had been wrongly diagnosed. it was i shock i was very upset and also very angry i had taken these drugs in good faith and i had
suffered for the last 10years with having alot of seizures daily and not been able to have a life i lost all my independance and had to be looked after like a child having someone with me for 24 hours a day my husband even had to give up work and i was told not to have a family which as i was labelled an uncontrollable epileptic as well as having all the fits i was having i had started to feel really unwell a few month before i was told i hadnt got epilepsy but i thought it was because i was exhausted from having all the seizures i was having but even after the drugs were stopped and all fits had stopped i was still feeling very poorly and i notice i was bruising for no reason so i went to the doctors and was told women bruise i deceided to go docs again as i was definitely getting worse and the bruises were increasing this time he sent me for blood tests and sle was diagnosed i was started on prednisolone a but i didnt feel much better close friends and family asked me if i was going to do anything about being misdiagnosed in the end i decided to go and seek legal adivice a start a claim compensation was never the issue i wanted justice especailly with being told not to have a family as i would of loved to of had children anyway as i mentioned i was on prednisolone but still didnt feel well so i was put on azathioprine after being on this for a short amount of time i had a couple of fits i couldnt beleive it i was admitted in to hospital again and it was found that i had irreversible damage caused by all the fits i had had for 10 years and im suseptible to fits if a side effect of a drug happens to be can cause fits which some can so the azathiprine was stopped and i cant take it i have to becareful with other medication too i preceded with my med neg case which went on for 9 years but i didnt succeed the expert i went to see regarding all this backed down and went againist me so i didnt get any compensation what so ever during the 9 years of fighting alot of my medical records went missing from a few of the hospitals i attended the case never even got to caught i was told in 1998 i didnt have a case which is quite along time ago now i have had lupus now for nearly 20 years something i will never know is what it lupus initially or was it caused by the anticonvulsants i was given or the many antibiotics i was given just to passify me wen i felt unwell and exhausted wen i was having the fits all i know is before i was misdiagnosed i was a very healthy active young woman who really enjoyed life and i was very happy with a good job i use to swim competitively and was sport mad what really angers me in all this is when i had the initial eeg it states in my medical records that although there is a slight disturbance it is not diagnostic of epilepsy and yet it was still diagnosed by the specialist i was under and know one has been reremanded for it recently i was diagnosed with fibrolmyalgia and srojens disease which are very similar to lupus i take choroquin phosphate which i dont have a problem with when im very poorly i have to be given cyclophosamide i will never give in to these conditions im happy in my personal life i may even write a book and use my medical records as a reference as i do have a copy of the ones that didnt go missing maybe one day i will get justice writing a book will make people aware of what happened then it wont happen again but i do beleive it has come to light recently that people have been misdiagnosed of epilepsy i always knew the med neg case wasnt going to be easy close freinds and family want me to try pursue a claim but it is too late and to be honest i dont want the stress especially with not having very good health to me the most upsetting aspect in all this they told me not to have a family and this is very difficult to come to terms with my parents have never had grandchildren either which upsets me
living with lupus isnt easy but i will never stop smiling
I was diagnosed when I was 17 and was told I would never have a problem. Then when I was 19 I had a fit and was diagnosed with tempral lobe epilepsy.
When I was 23 I had my first lupus flare up and I had awful arthritic pain everwhere and like u pain in my back and shoulder blades, I went to my gp coz at the time I didn't know it was my lupus and I was put on antiinflamitries and I was sent away. This didn't help so I went back and I was put on steroids. Eventually I lost the use of my right foot and couldn't walk and I ended up in A&E I was put on more steroids and painkillers and was eventually reffered to a rhematoligist. He was sooo angry that I had not been reffered before considering that my mum has lupus and she was under him he said that I wouldn't be in this mess if it hadn't been for my gp and he told me never to go to my gp about my lupus ever again . His name is dr hughes and he is at st peters in chertsey, surrey. He is awesome and he has never let me down.
I let myself down however last year when I stopped taking my medication (coz I was stupid) and ended up in hospital coz my mum thought I had pneumonia but i had clots on the lung. I also couldn't walk again properly and had a steroid injection. I got over that and I was put on steriods again and I was fine but when u are on steroids they don't fight off infection and I have had laryngitus for god knows how long and I have had pinalidol sinus which is an ingrowing hair that gets infected so that turns into an abssess it is extreamly painful. I was lucky however coz mine burst but I have to go to the hospital to get my dressing changed. However my mum had the same thing and had to have hers operated on and hers came back 2 more times!!
Basically you are not alone and there are some consultants that do have a clue u just have to find them. I hope u eventually find one and he can sort u out xxx
Oh and I have also heard that dr d'cruz at st thomas in london is very good. Good luck mandie I do feel for u coz I have been there and so has my mum xxx
My names Louise, I have just read everyone elses comments, and i agree with everyone, i'm 23, i was diagnosed when i was 19 but like most people i was dismissed, they thought i had repetitive strain injury from texting to much!!!! what a joke! my first symptoms were swollen and achy fingers and swollen and achy knees. I was rushed into hospital when i got an overwhelming infection and my lymph nodes were up and fully swollen... i had been seeing a rhematoligist at East Surrey Hospital, Dr Shattles, he was a bit of a help but after 3 years of him saying he didn't know what to do with me and i was an "unusual" patent, i asked to be referred to St Thomas's Hospital. I suggest you kick up a fuss to go there!!! you have to!!! ever since i have going there, only the last 6 months, they have helped me a great deal. I see Dr Cuadrado and have seen Dr Cruz, they are the top people. I felt lost and felt so depressed before i saw them. Noone seems to understand, and whenever you try and explain things, it always come across as if you're exagerating. I am currently taking mepacrine which can only be prescribed from st thomas's, lowered my steroids to 10 mg, hydroxychloroquine and microphenolate, my main concern was steroids. i been up and down from 40mg to 15 for the last 4 years and i've had horrendous problems because of it, all because noone referred me to st thomas's. Do everything you can to get their help! I wish you all the luck in the world... this is so misunderstood and i wanna try and connect with as many people i can because we all need to help one another. much love, louise xxx
Your GP needs to be reminded of the words "Choose and Book" which is the system used for patients to choose who and where they are referred to, as long as there is a referral from your GP. As all have said above, complain to the practice manager AND your PCT, see another GP, and go armed with your documented symptoms and information provided by Lupus UK. Insist on a referral and if that fails, go home, and follow the NHS direct advice to go to hospital. I know it is horrible, but that is what I had to do 2 weeks ago, and it FINALLY got me somewhere xxx
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