appointment

[anbuma]

hope I have better luck with rheumatologist than gp this morning.will he actually listen to me or fob me off the same way?need a drink fro courage before hand and fro the depressed state I will be in afetr if he doesn't listen and accept what I tell him

[anbuma]

I knew he wouldn't listen to me.struggled to keep back the tears on the way home.i dont have any drink in the house,

[misty14]

Hi Anbuma

Sorry you had a tough Rheumatology Appointment. What did he say to you?. Your entitled to a second opinion if you have the strength for it! It's hard fighting when your not believed and horrible but don't give up! Take Care X

[anbuma in reply to misty14]

thanks Misty,i intend to keep battling its shame other members aren't supportive and make sarcastic or unacceptable comments makingme out to be the bad guy.,they know who they are

.i told him straight that what he wrote in the letter to my gp was incorrect that I hadn't said my weight was stable but my symptoms had been from 2005 when I first saw him to 2011 when symptoms worsened.he said that my weight had gone up 11 kgs but again would not accept that it was all abdominal or that I had lost weight elsewhere and I told him he hadn't given me the opportunity to tell him of latest symptoms ie skin rashes,nasal sores,facial swelling.etc he did admit that CA125 was a gynae concern and not his and I questioned him about going on about diet and weight loss when I had told him back then I had a poor appetite and only ate breakfast and a small meal and hadnt touched cakes biscuits snacks or puddings fro about 5 years and im the same now-if not worse cos even struggle to eat breakfast.again all he kept on about was losing weight (even tho I have never changed my story and told him Its not a diet problem)and getting more exercise.so told him i get plenty of exercise walking my dogs twice a day for 2 hours+ plus i rarely sit down apart from when i sleep after lunch and regarding weight until my stomach is sorted the weight wont shift.then his attitude was you need to lose weight,exercise more and need to change gps.so walked out and said thanks for nothing. as he was obviously not prepared to listen.

[tintin49]

have you had any bloods taken for a diagnosis

[MargaretGail]

Hi Anbuma don't despair my first visits to the Rheumy in 2007 were a complete disaster! I was accused of putting it on and then told that I 'only' had chronic fatigue. I found a GP who new nothing about SLE who was prepared to learn, and that is what he did and I refuse to see anyone else. He referred me to a different Rheumy who listened to me. Interestingly I saw the first rheumy while I was waiting for my appointment last week and was struck by the complete hatred I felt towards her she had made feel so bad about myself!

[tashi]

Hi Anbuma Sorry others have been horrible to you, lupus is bad enough to cope with. My GP is an angel making a referral to Derm for bald patch with no hesitation after she did basic bloods. My first rheumy appointment consisted of him changing doses of all drugs prescribed by GP that worked for raynauds etc, telling me that the drugs Dermatology prescribed for Discoid lupus (They're fab and did skin biopsy & bloods and diagnosed lupus in the first place) wouldn't cause the problems I was experiencing.... he actually said just because a symptom is listed as a possible (even common) side effect doesn't mean you'll get it. Wasn't long before he had to take me off Ramipril as blood pressure dropped too low, Mepacrine because it was causing problem with liver - which has corrected itself but I can't take tabs again. And as of yesterday, my GP had to speak to him to find out what he wanted to do as my platelet count was below normal range (nosebleeds and scratches don't stop bleeding), GP had previous patient with diff consultant who had platelet transfusion... Rheumy said stop Azathioprine (150mg only been on 1 month) and check bloods on Monday. I understand why but it is hugely frustrating as we're the ones who feel ill, tired etc and have to live with lots of symptoms. Stopping Aza for 1 week will show if platelets increase, it's cause is drug. If platelets stay low, it's the lupus flaring again (am already on steroids as this flare started in November dropping red/white cell counts too low they're being maintained by steroids).

Please don't despair, lupus is a slow road. Diagnosis is not straightforward or obvious, so try not to loose it with Rheumy - they don't seem to have good people skills - even my GP said that, but she also said she trusts him...so I come home and rant about his lack of manners and then carry on coping - as we all do.

Contact me privately if you would prefer, happy to share experiences with you if it helps

[anbuma in reply to tashi]

thank you tashi

[bestbuddy]

Hi there, I am so sorry you are having such a difficult time and that you feel that you are not being taken seriously by the medical profession Anbuma, I really feel for you and sense your mounting frustration.

I too feel I have beaten a path to my surgery door over the years in an attempt to find the answers to my many symptoms. Currently I am under a rheumatologist for a 'lupus' type condition, I have coeliac disease and an underactive thyroid too ...and I see an orthopaedic consultant for the damage to my joints. I found out today I am scheduled for further surgery in May....PHEW! You are not alone in managing many medical symptoms.

I realise that symptoms take many years to manifest themselves fully and to develop into full blown conditions and it is hard being the one having to cope, especially if you live alone. Sometimes, the doctors take a 'wait and see what happens' attitude when you are the one living with the problem and trying to manage it.

I am glad that you have your lovely dogs, I am sure they bring you a lot of joy and love you for who you are. Please don't carry your burdens alone, continue to post on here - there are many of us who do care and who would offer continued support.

BB

[anbuma in reply to bestbuddy]

thank you so much BB I really do appreciate the support of those on here who do care and its a shame there are some who are so opinionated and uncaring .my dogs are my world and far more loyal than anyone I know.since ive been unwell my Annie is at my side 24/7 and this night she has once again been cuddled up so close to me.