New

Hi.all I'm newly diagnosed 5 days ago .posotive ana antibodie.after nails splitting and really deep ridges .hair falling out.Dr said treatement will b same as meds I'm already on .for M.E.of which I was diagnosed with 2 half yrs ago. Gabapentin 900mg daily amitryptiline 35mg at night .codiene & antimflamotory.s daily.I am rather confused now are my symtoms ( muscle & joint pain .breathless fast heart rate. Swollen finger & toe joints ) .down to ME or lupus ? . Gp wanted to send me to rheumatoligist .but I refused .I've had bad experiances before with specialists. Feeling worried of where this diagnosis of lupus leaves me. As far as treatment is concerned.Dr has agreed to treat me himself.is anyone else in simalar stuation? .Thank you for excepting me to the site I'm very grateful .

9 Replies

oldestnewest
  • Oh I forgot to add thyroxine 100mgs daily .thyroid problems started first about 3 an a half yrs ago .

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    Forgive me for being confused, if you have not seen a lupus specialist, how can you have a firm diagnosis of SLE? Systemic lupus erythematosus is difficult to diagnose as there is no single blood test to confirm. A positive ANA is not necessarily a confirmation of lupus as some people have a positive ANA and who do not have lupus. Similarly, there are lupus patients who are sero-negative.

    Perhaps you could say where you live because IMHO, you need to see a lupus specialist. Not all rheumatologists are expert in lupus; some have never treated lupus patients. I am concerned because no matter how good a GP may be, they are not experts. Depending where you live, I may be able to advise you who to see, especially if you have had bad experiences.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes,

    Ros

  • Hi. Yes dr as told me it can not be officially diagnosed unless I see a specialist.but I'm still reluctant to see one. Dr says he's sure its lupus .I have thyroid problems diverticular decease.barratts mucosa .ibs & spondolosis .for which I receive medicatiin for.Then about 2 & half years ago was diagnosed with M.E..Most recently I have had morning stiffness in hand joints .Very bad frozen shoulder for over a year now .swollen big toe joints .Plus being wiped out constantly for days on end .My gp is wonderful and understands my reluctance to see a rheumatoligist. But I have agreed I would go if needed to.My gp as took all this in account before telling me he is fairly sure its sle .So maybe I should of rethought my post and put a question mark next to newly diagnosed.Thank you for your message.I would be grateful for any advice offered to me.Kind regards .Jayne

  • Hi. Yes dr as told me it can not be officially diagnosed unless I see a specialist.but I'm still reluctant to see one. Dr says he's sure its lupus .I have thyroid problems diverticular decease.barratts mucosa .ibs & spondolosis .for which I receive medicatiin for.Then about 2 & half years ago was diagnosed with M.E..Most recently I have had morning stiffness in hand joints .Very bad frozen shoulder for over a year now .swollen big toe joints .Plus being wiped out constantly for days on end .My gp is wonderful and understands my reluctance to see a rheumatoligist. But I have agreed I would go if needed to.My gp as took all this in account before telling me he is fairly sure its sle .So maybe I should of rethought my post and put a question mark next to newly diagnosed.Thank you for your message.I would be grateful for any advice offered to me.Kind regards .Jayne

  • Hi. Yes dr as told me it can not be officially diagnosed unless I see a specialist.but I'm still reluctant to see one. Dr says he's sure its lupus .I have thyroid problems diverticular decease.barratts mucosa .ibs & spondolosis .for which I receive medicatiin for.Then about 2 & half years ago was diagnosed with M.E..Most recently I have had morning stiffness in hand joints .Very bad frozen shoulder for over a year now .swollen big toe joints .Plus being wiped out constantly for days on end .My gp is wonderful and understands my reluctance to see a rheumatoligist. But I have agreed I would go if needed to.My gp as took all this in account before telling me he is fairly sure its sle .So maybe I should of rethought my post and put a question mark next to newly diagnosed.Thank you for your message.I would be grateful for any advice offered to me.Kind regards .Jayne

  • Hi. Yes dr as told me it can not be officially diagnosed unless I see a specialist.but I'm still reluctant to see one. Dr says he's sure its lupus .I have thyroid problems diverticular decease.barratts mucosa .ibs & spondolosis .for which I receive medicatiin for.Then about 2 & half years ago was diagnosed with M.E..Most recently I have had morning stiffness in hand joints .Very bad frozen shoulder for over a year now .swollen big toe joints .Plus being wiped out constantly for days on end .My gp is wonderful and understands my reluctance to see a rheumatoligist. But I have agreed I would go if needed to.My gp as took all this in account before telling me he is fairly sure its sle .So maybe I should of rethought my post and put a question mark next to newly diagnosed.Thank you for your message.I would be grateful for any advice offered to me.Kind regards .Jayne

  • Hi. Yes dr as told me it can not be officially diagnosed unless I see a specialist.but I'm still reluctant to see one. Dr says he's sure its lupus .I have thyroid problems diverticular decease.barratts mucosa .ibs & spondolosis .for which I receive medicatiin for.Then about 2 & half years ago was diagnosed with M.E..Most recently I have had morning stiffness in hand joints .Very bad frozen shoulder for over a year now .swollen big toe joints .Plus being wiped out constantly for days on end .My gp is wonderful and understands my reluctance to see a rheumatoligist. But I have agreed I would go if needed to.My gp as took all this in account before telling me he is fairly sure its sle .So maybe I should of rethought my post and put a question mark next to newly diagnosed.Thank you for your message.I would be grateful for any advice offered to me.Kind regards .Jayne

  • I can understand your reluctance to see a 'specialist' as I, too, have had bad experiences. I still had to visit them and after a while a super one came along. I am sera negative and my symptoms started in the 'swinging sixties' . You don't need to know your exact blood results if you live in the UK. I was told by this great Doc that it is not written in blood if you have Lupus, rather in your medical signs and symptoms. It is good you have a good GP, but ask to see a different specialist if you don't get on well with the one you are seeing. Be prepared, give symptoms clearly, but never tell a doctor what you think ails you. I wish you well.

  • Hi. Sorry to hear u have just learnt u have lupas. What was your postive ana reading please if u don't mind me asking? And was u postive anti -ds DNA ? My ana was postive 1-100 and anti -ds DNA was 42.1 which is also postive but my ena was negative. I have lots signs like hair loss is really bad. Rayneuds disease. Spots on face. Bad headaches and migraines. Eye hurts. Eye senstivty. Sweats. Pain. Swelling in feet and livedo recyltits on arms and legs but my consultant says don't have it and my blood results was fine. Feel like need second opion from a different consultant. Think I'm going to struggle to get diganoised if have it

You may also like...