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Discussion Starter · #1 ·
Hi everyone

Just wanted to let you know that after moving to Kent 7 months ago I have finally got an appointment with a new rheumy.

I just hope I haven't got to start all over again and waste another 7 years to "almost" get a diagnosis.

(My last rheumy at Worcester wrote "Lupus??" in my notes and wanted to revisit bloodwork after I had come off prednisilone.)

Well, I've been off the pred for two months so any effect on my blood may well have worn off. By the time I get to see him (25th) it will be three months off so something might show :rolleyes: .

Starting to have a flare now, very achy, legs feel like lead, can hardly see, butterfly is coming along nicely (will take photo of it in case it goes down for the appt), phlebitis in leg, soooooo tired, don't want to eat (not even chocolate), livedo on hands and arms permanent, lower legs feeling as if I have sunburn. Won't be long before I start the muscle spasms.

I've just got over a very extended cold (seriously painful throat, nose like a tap and headaches). Could this have flared everything up?

I will take the advice that many of you give and write everything down for the rheumy. Should I contact my old department and get my notes sent down or do you think it is better if the new one starts with a clean slate?

Sorry to have such a long post but feeling grottier by the minute. (and I'm typing this at work when I should be doing "important stuff" :lol: )

Hope you are all doing well today.

Love Judi xx

P.S. Started taking Ramipril for blood pressure since Saturday. Do you think this is a coincidence or the med kicking in and causing the flare?
 

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I would rather doubt the new medication is causing the flare - you can read about the side effects online and see if any are listed that are similar to a lupus flare. In my experience, an infection (viral or bacterial) does seem to be responsible for setting off a disease flare though.

I hope you have found a good rheumy & get some appropriate treatment and possibly a diagnosis after just a few visits (they are rarely given out at the 1st appointment as you know all too well!).

Take care & write back to let us know how it goes! Sounds like you have a great plan....
 

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If you feel the last Rheumy believed you then maybe it is worth getting the notes if you can. If he wasn't very helpful I wouldn't worry about it.
I hope you get a diagnosis soon or some decent help while you wait for one.
x Lola
 

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:) Hi Jodi, I am glad that you finally have a new Rheumy.
I would take a list of my symptoms, a copy of yours,that you can tell him he can have to put into your folder. As for getting your records, you don't know if he is going to want them just yet, or at all. I would wait till the end of the appt and if he doesn't bring it up, then you bring it up.
I wish you all the luck there is, let us know how it all goes.:wink2:
 

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Hi judi,
I would request a summary in letter form from your old rheumie rather than starting again if you feel there are things that need to be passed on.

Also Ramipril is fairly well tolerated generally apart from the perenial dry cough that comes with it. I would guess its the cold causing the flare.

Take care
 

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Discussion Starter · #6 ·
Thanks all for you replies.

Sorry I have not replied sooner but I managed to slice a piece off my middle finger of my left hand (my good one) on Sunday and haven't been able to type until today.

Just to add a couple more sx to my stack, I think I have another kidney infection on the brew and I have had horrendous ribcage pain for the last 36 hours. I'm due to see the pratice nurse again tomorrow (for my finger) I'll run by my sx to see if I can get to see the GP.

Hope all of you are faring well today.

Love Judi
 

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Good luck with your Rheumi visit on the 25th! It sounds like your last Rhuemi was pro-active and wants to try to find a time when other bloods might shows signs of Lupus. Was he the one that arrange your new Rhuemi or was it the GP. If past info is not past on from Rhuemi perhaps your new GP can corulate a list of past/current symptoms and all your old test results!

My Immunologist gave me a bloodwork sheet and told me to get my bloods done only when I felt at my lowest! I did that and low and behold my bloods showed signs of high ds DNA plus abnormal C3/C4's so he was then able to confirm a diagnoses of SLE. This probably was just a fluke but who knows it might be worth a suggestion to your new Rheumi.

Hope your finger is okay now - I hate the sight of blood and it made me feel ill thinking about your finger!

Have you been to the GP for your suspected kidney infection yet!

Do you know what is causing the rib pain I would be interested to know if you have/or get any answers! I have had rib/back/tummy pains (similar to contraction pains) since yesterday morning! Mine may well be connected to a new NSAID (can't take now) or virus/flare or other unknown element!

Take care and let us know how your Rhuemi appointment goes!

Love Lesley
 

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Discussion Starter · #8 ·
Hi Lesley

Thanks for your reply. The finger is not too painful today as I can type! (not using it though).

My new GP arranged the consult. She had got details from my old GP in Worcestershire and copies of letters from WRH rheumy so I think she would have sent details along to Kent and Sussex rheumy.

I am due blood presure and dressing change tomorrow and I will take a sample along to the surgery when I go. I don't feel too bad but was feverish and shivery last night and went to bed at 9:15. Hubby at home today so as I can't drive at the moment (finger) I'm stuck at home with him "working" :lol: . Trouble is, every time I go to the computer I end up on here!!!!!!

Love Judi xx
 
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