had my first rheumi appt

[londongirl]

:(

hi there everyone, just to say i had my first appt at st thomas lupus centre with the rheumi yesterday, and well what can i say things did not go to well for me:( firstly i felt so ill, had a lot of pain and was really tired, secondly had written down in pad questions that i wanted to ask, symptoms that i was having, but low and behold i forgot to take it with me:( i think as well as the tiredness, i was very anxous which did not help, by the time i got there i was totally wrecked,,, upon going there i had water sample, which showed protein, weighed, and blood pressure, protien found in water,,, had eyes and mouth, sorted out and confirmed dry eyes, and mouth,, then came the rheumi lady doctor which was really good,,, but i was so nervous,,, she examined me, then asked about loads of questions, well my mind was like scrambled eggs, i was in a state, she then said that she was going to have all the bloods re done and more bloods that i had not had,,, so should get them in couple of days, i said do you think i have it? she replied do nto know, i would have thought that due to all your symptoms and the photo i have seen, the ana, and dna should have showed something, but nothing so far i think thats why she is re ordering them done again, i had 18 tube fulls taken, so hopefully something might show,,,i said what if all come back negative what then,,, she said then we go on and investigate ,,, a lot of the bloods i was having was to rule out other things aswell, so i then said what if neg as well to everything, she said dont worry we will continue, then she started saying about then we go on the medical clinical symptoms present now, and get you treated ,,, she put me back on the plaquenil, as she said there is definately things going on with my legs, but would not commit until tests, but what got me was m y next appt with her is may 07, i said god i could b e dead by then at this rate, i cant go on like this, she actually laughed and said no you will liase with the nurse here, and ring her and we will sort things out, its not that we are just going to leave it like that,,,, so really i was disappointed, esp with myself, by brain scramble, i could have kicked my self that is if i could of:) what made me laugh aswell was that when i went in there, everybody looked really great and well, but me i looked like death, hobbling along, one of the ladies said i can tell its your first visit i said whys that, she said cos the way you look, we both laughed,,,, i still dont get it though, all this treating the symptoms, individually, as the rheumi was going on about connective tissue disorders which affect the muscles, so basically i am just gonna leave it like that, as my brain cant take much more, i really really feel unwell at the moment, words cannot describe how i feel and how let down with myself i feel,,,, aswell,,,, so what i am wondering is ,,, is this the sort of thing that normally h appens, and cant understand why it is such a long wait, she said cos thats how we do it here, otherwise we would never be able to get the chance to see people like yourselves, its left down to the lupus nurses to sort things out until i go back,,, so well thats it ,,, thanks for listenening any help and information would be great from your own experiences, thanks so much, look forward to hearing from you, take care, from a depressed, beaten up, fed up, in pain, confused, londongirl:lol: liz.. bye,,,,,,

[cath]

Hi Liz,

Sorry you are feeling unwell at the moment.

Don't feel too bad about the appointment. Acually it sounds like a pretty good first appointment.

It is pretty unheard of for a doctor to give a definite diagnosis on the first appointment. Most will wait until they get the blood tests back

She DOES think there is something going on because she said that it is a connective tissue disorder and put you back on plaquenil. If she really thought it was nothing or something like ME, she wouldn't have done that.

From what you write, there were lots of things found during the examination that were not normal (like your dry eyes and mouth, proteinuria, leg problems). That your story was less than complete won't make that much difference - you will have time in the future to tell the things you forgot this time. You could even post or fax them a copy of your notes if you wanted. I'm still remembering things that I should have told my rheumy but til now hadn't remembered too:hehe: .

Remember that the right diagnosis is the important one. This doc obviously thinks there is something wrong with you, and wants to work out exactly what. There are several autoimmune connective tissue diseases as well as lupus. Lupus isn't the "best" or most essential diagnosis to get - the RIGHT one is the most important. Getting another diagnosis doesn't mean you have been misdiagnosed or let down in some way. The treatment for the disorders in this family are all very simmilar anyway. Plaquenil is the right first choice whatever it is (if it is a ctd, which it sounds pretty certain it is).

The nurses at St Thomas's are great. They will be able to answer a lot of your questions, and if it is something urgent will contact the rheumy for you and push for an urgent appointment. They are also contactable via email, which makes it so much easier for you.

It is unfortunate they are so busy - that is the NHS for you:mad: , and of course they are one of the best in the country, so get referals from the whole of england. How is your GP? You will probably still need to see your GP often for day to day problems. Your GP will (should) be able to contact St Thomas' too for you for urgent or serious developments.

For yourself, I'd take the sensible precautions anyone with lupus/sjogrens/UCTD etc should take - ie 50+ sunscreen block if outside, pace your activities and get enough rest and some gentle exercise too, avoid immune boosters like echinacae, eat sensibly etc.

It would be a good idea to keep a close eye on the proteinuria. Get your GP/nurse to recheck it. If it is something that is found regularly, a 24 hour urine collection is a good idea. If it is more than just occasional, you might want to get a bottle of dipsticks yourself to test at home. You can then let the doctors know exactly what is happening, and know for yourself too that it will be caught early if it gets serious.

Hang in there,

X C X

[helloos]

Hi Londongirl.

I am sorry that you aren't feeling well and that you forgot your list at home after all the work you put into it.

I tend to agree with Cath though, your appointment did seem to go well. The doctor seemed thorough and you did have quite a lot of blood taken and she stated that she would not dismiss you even if the bloods are negative. She chose to treat you with the Plaquenil and said that you can see the nurse before your next visit? I assume that they will contact you with the blood results.

Don't be too down on yourself. You did good. This appointment is over with and now the blood has been drawn and you started treatment. Maybe now things will fall into place. Try not to look at it like your appointment is 6 months away and you have to be sick all that time, cause the Plaquenil may work sooner, your bloods may show something in the meantime and they may help you with that. Take one day at a time. Rest now since this appointment is over and rest assured that someone is finally going to help you.

Hope you feel better.

[londongirl]

:)

hey you guys,:) thanks for contacting me back it was kind and thoughtful of you both:) you have made me feel a lot better about it all and i do not feel so down about it now,,,i think the m ain problem was that i felt so ill on that day aswell, what with the pain and the blinding headache, it just got all too much for me to handle and take in,,,, what you both have said has made me understand what in fact was said and why it was said,,, and what happens next,, it got so confusing in there, i just couldnt seem too take it all in,, and i was really scared aswell,,, so once again ladies, thank you both so much, take care, and thanks,, xxx lizxxx:)

[shannon34]

Hey Liz -

You and I were in the same boat, me having had my first appt. on the 1st and now, seeming to still be in the boat (help, I want out! lol). Just to try and reassure you, let me tell you how my appt went. The rheumatologist office had sent me a pile of papers to fill out at home to bring to my appt. and I spent days going through information, answering questions, signing forms, etc. and I also included my pcp referral for the appt. with the papers so that I wouldn't forget it. It took two months for the appt. to come, and in that time I managed to forget about the papers and assumed that my referral was still folded neatly in my handbag ready for the appt. where I would be sure to have it, lol. Also in this time, I had looked up the address on the internet and saw a map giving the cross streets for the office. Fast forward to nov. 1st: I had to take my boys with me because I didn't have a babysitter so the morning began with getting me and the boys ready to go. It crossed my mind to look on the internet and jot down the address, but in the end I guess I figured as long as I had the phone number and cross streets surely it would be no problem. If I had taken my cellphone that is! The main thing on mind that morning was that I had to stop by my neuro's office to get my records, so I left early in case there was a delay. Long story short, my sons and I ended up in the general vacinity of where the office is supposed to be, popping in and out of medical office buildings looking at their directories for the name of the doctor, and after walking into about 5 different buildings still did not find it! By now I was tired of carrying the baby and my 3 yr. old did not want to walk any further. We still had to walk back to where the car was parked. No cellphone so I couldn't call. I ended up going into an ob/gyn's office and asking the nice ladies there to kindly look the doc up in their phone directory and it turned out I was close, but needed to drive the road a bit further. Fine. We greatfully got there, on time and everything, whew! When we arrived, I immediately got out my ID and insurance card and began looking through my handbag for the referral. No referral! I sweetly explained to the receptionist that I must have left it at home and could I see the doctor today and fax the form to them immediately? No, I must have the referral to see the doctor today but I can call my pcp to have them fax over a copy. The unfriendly ladies at my pcp office already did this for me once and informed me that they wouldn't do it again! Well, I had no choice and to my relief they sent a copy over no problem, whew! Next, the receptionist asked the dreaded question "can I have your forms?" Me: "what forms?" Her: "Didn't you get the forms we sent in the mail?" Me with lightbulb turned on over my head: "Oh, my gosh! I can't believe I completely forgot the forms!" Turned out that was fine and I just had to fill out a couple of things there, but I felt that the doc would not be getting a very cmplete picture without the original forms. Alas, I saw him with boys in tow, getting into everything and I couldn't fully concentrate on me and my concerns. So far, the bloods have all come back normal, but my urine had high rbc count so I went to redo that and had a couple other blood tests. Now I am awaiting the results. Sorry this is so long, but I wanted you to know that I think we both had so many expectations and worries that everything went absolutely pear-shaped on the day! It sounds like despite your frazzled state, the doc managed to get your tests sorted and everything went as well as could be expected under the circumstances. Keep us posted about the results!

[londongirl]

Hey ya shannon, yep we are alike, its terrible isnt it when things just go pair shaped, and the trouble is you have to wait a long time to rectify them,,, have not got the blood tests back yet though shannon, but to be honest from what i have learned about lupus, and other stories, i think i am going to be a unllucky one where dx is not going to be easy, as i expect bloods to come back negative, but i am prepared for thatxx the thing that got me the most was what i did you know forgetting stuff, not asking what i wanted too, but thats life i suppose, i am going to fax it all across to the n urse there, so she can put it in my file, for the next time,,, and be prepared, i think aswell cos i was so worked up about it being my 1st appt you know, i was nervous and scared as well, so definately next time i will be prepared,,, ha ha,,, well sorry to hear about you, doing the same as me, but im sure the next one you will get it sorted out, i unfortanely have to w ait until may 07, i hope yours is sooner honey for you,,, but thanks so much for telling me your story, and replying it was kind and th oughtful of you, i will let you know about the blood work though cos should get that results at my gps next week,, so take care shannon, keep me informed as to your next visit aswell, :) londongirl, lizxx