Lupus nightmare!

Hi I'm Stephanie. I'm 25 and got diagnosed with SLE 3 years. My rheumatologist is useless and refuses to help me. Unfortunately lupus has affected my brain and I suffer from severe seizures which has been happening for the last 2 years and I am still not being treated for the seizures. The seizures are ruining my life because I can't work or drive and I have to have a carer 24/7. I feel like I have run out of options. Does anyone have any advice for me. It would be greatly appreciated.

11 Replies

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  • Hi Stephanie, omg shocked to hear you suffer so badly and you dnt receive any good medical attention the only thing I can suggest is demand you see another dr and quick, why on earth are they not trying to get you into remission or treating your seizures?? You could try ringing lupus uk for advice on what to do if you live in the uk xxx

  • Can't you try getting your gp to refer you to a neurologist for the seizures? You can't go on like this!

  • Good morning Stephanie,

    I too am deeply shocked that you not under strict medical care for your Lupus and seizures, this is not acceptable at all, you should at least, I would have thought, been under dual care of a Rheumatologist and Neurologist.

    I am sorry you have been left alone to deal with your seizures, you must feel totally abandoned, not to mention frightened.

    If you are in the UK, as has been suggested, please please make an appointment with your GP and start the ball rolling to get you the proper care you urgently need, and remember, you do have the option to choose and book with the NHS, and you also have the right to be seen Consultants you are comfortable with and are proactive in your care, so if you are not happy with your current Rheumatologist, ask to be referred to another.

    I can let you have the name of my Rheumatologist, she is absolutely superb, very thorough, listens and I feel totally safe and confident in her care.

    Also if you are a UK resident, there are benefits you maybe entitled too, Lupus UK have guides on benefit applications.

    Best wishes

    Karen

  • Hi Stephii89,

    Are you currently being prescribed any treatment for your lupus?

    It sounds as though you need to lodge a complain against your rheumatologist. You can learn more about the NHS complaints procedure here - nhs.uk/choiceinthenhs/right...

    In addition, you really need to be seen by a consultant for your seizures. Usually a neurologist would do this, so it is worth asking your GP to refer you. If you don't wish to continue seeing your current rheumatologist them you may want to ask for a referral to a different one too.

  • Stephanie, Lupus is the most puzzling disease of mankind. No one really has answers. There are meds and steroids for it, and sometimes they help. At our age, you have avery good chance of going into remission and getting healthy again. It's difficult to handle and has so many complications. But please - have hope! Younger people DO go into total remission! I never liked Reumatologists - I see a hematologist and a Primary Care doctor. Rheumys never did anything for me other than order more labs and recommend meds with ghastly side effects that my hematologist always turned down. Get yourself a good pracice with a staff of hematologists/oncologists. They are more understanding and will monitor you closely. Lots of doctors "push" people with Lupus onto rheumys because they are frustrated, dealing with the most misunderstood, complicated disease of all time - Lupus! I saw 3 rheumys - enough for me! My hematologist is the one important doctor in my life and then comes my Primary Care doctor.

  • Hi Stephii89

    I too have had brain involvement with lupus so I know how you feel. I have to agree with what others are saying, that you should asked/ demand that you are referred to a neurologist asap. Also ask your GP to refer you also and if you have no luck with either of them request another doctor, as you must not let this go on untreated. My thoughts are best wishes are with you and I hope that you start to receive the treatment that you are entitled to. Take very good care x

  • Hi Stephanie

    I agree with all of the above. Another thought, if you have care 24/7 ,do you not have to satisfy criteria for that? Is there someone within that system who can help support your requests to your GP, or another GP?

    That is my only other thought onyour situation. We can see that you need to be looked after by a compassionate doctor.

    Every good wish for you to receive the proper health help.

    I will follow you to see how things go.

    all good wishes.

  • I am currently taking Hydroxychloriquine and Azathioprine for my lupus. I have been reffered to a neurologist in Queens Square in London but I am awaiting an appointment. I have been to every local hospital in my area over the last 2 years and the neurologists have given me diagnosis of Small Vessel Disease of the brain but have never given me a follow up appointment to treat me. I have called the hospitals numerous times and have been told every time that I will be put on a waiting list. My GP has supported me 100% through this extremely tough time and has put his foot down and reffered me to a London hospital in hope this will get me some where. My carer is a family member so I haven't gone through any systems to get a carer.

  • It does seem a disgrace that you have had this battle to get proper specialist care and support. The lack of follow up seems to be the worst part of your story because Lupus is relatively rare and you are young and I would have expected you to be under a neurologist who was concerned with your specific case.

    Mind you I am under a neurologist and rheumatologist and still end up relying heavily on my GPs and reading up and learning. I have a non-erosive type of RA with multisystem autoimmunity. But then I'm over twice your age (52) and was told that the reason I haven't got Lupus is that it generally improves once the child bearing years are over so as others have said, you should try and stay positive - although I know it must be very frightening for you a lot of the time. It is good that your carer is a family member but if you need help from social services instead or in addition then having a good specialist will help I feel. I hope your appointment at Queen's comes soon and you are able to receive tip top treatment from then on.

  • Hi Stephanie your post really touched me. Im so sad for you & how your feeling. This is such a dreadful disease that can be so lonely at times. Im a little older than you (36 yrs old) i was diagnosed 4 years ago. My lupus is quite severe & has caused me loads of problems including pulmonary fibrosis its just so painful to breathe. I echo what everyone else advised please dont just accept that specialists refuse to help you, go back to your GP & vent your desperation surely he has some authority to upgrade the urgency of your care? You are so young & it sounds your lupus is severe. Please shout & scream till you get heard, torture the doctors they cant ignore your situation. Get your family to write a letter of complaint to your rheummy, he has to respond - demand answers. Try to Stay positive i know how hard it can be but you will have brighter days when your symptoms are hopefully stabilised. I have such down days too everyday i tell myself the next day will be better & most of the time that day never comes 😞 i have app wiv rheummy nxt wk & im demanding a change in my meds (plaquenil) because at the mo im just existing not living. Remember Your never alone on this forum. Sending you lupie love xx 😊

  • Stephii89

    I started to have seizures January 2013. I was in hospital and a neurologist got involved. I saw him a few times since then. After the hospitalization and a few other detours, a Rheumatologist came up with the hypothesis that my adrenal glands failed leading to low blood salt (Never knew human blood was salty) He increased my methylprednisolone some and kept testing the blood. A few months later, my insurance looked like it lapsed. To make the seizure medication last, I cut the dose in half. No seizures and stable blood salt. I don't recommend what I did but after one last unpleasant visit with an arrogant Neurologist, I SLOWLY eased myself off the Kepra and have not had another seizure. Since January 2014, I have been living in my own home. Good luck!!

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