What else can go wrong with me?: Well just... - PBC Foundation

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What else can go wrong with me?

123PAT profile image
8 Replies

Well just found out that my consultant has gone on maternity leave (I wish her well) my new consultant is on annual leave (hope he has a lovely time) but I have been waiting since blood tests in July to find out if I have celiac desease. Last week complained to gp. about being constantly out of breath whenever I do tasks she sent me for chest x ray and ecg found out on Friday I have had a silent heart attack at some point so now have to wait to see cardiogist. What else can go wrong

I have PBC with most of the side effects from this

water retention high blood pressure depression

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123PAT
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8 Replies
EileenUSA profile image
EileenUSA

I'm so sorry to hear that your medical help keeps disappearing on you. Ugh. How awful. Not helpful.

Such stress. My hope for you is that you can get good care. Meanwhile I'm glad you posted here. We understand so well how things just pile on as if PBC wasn't enough. Hugs

123PAT profile image
123PAT in reply to EileenUSA

Thank you do much for your reply makes me feel better that I can write things to people who undstand. And that we're all going through this journey together

Skypony profile image
Skypony

Sounds like you've been through a lot, but you've still got your sense of humour - well done!

You should be able to get blood test results by contacting the consultant's secretary, or try PALS if that doesn't work. Also often they're copied to your GP.

Quite a few people on this forum report right-sided pain, and I'm not sure the absence of ultrasound evidence means it can't be PBC.

Really hoping you get the support you need soon. Best wishes.

123PAT profile image
123PAT in reply to Skypony

Thanks for the reply gp does not have results either but has said let's get the first cardiogist app out the way first then worry about everything else in turn. My family keep me strong.

mek4wlk profile image
mek4wlk

Hello, so sorry all of this is going on with you. Call your dr for the results. Just an FYI I was positive for celiac with a blood test they then did a endoscopy which came back negative. They say the only true result is an endoscopy. Good luck

123PAT profile image
123PAT in reply to mek4wlk

Thank you for your reply even my doctor has not had results but I try not to worry on a positive note my family keep me strong and uplifted they both have a very good sense of humour and keep me laughing.

mrspeffer profile image
mrspeffer

Happy Monday from across the pond. How very scary it must be to have to deal with all this unknown, plus to entertain new practitioners too. I was tested for celiacs, but I do not know if it was done correctly. The celiac site says to be eating gluten in large portions for awhile prior to test. Just couldn't do that to myself. My Hep. said it was ok not to do that Well, my tests were normal. So, I took it upon myself to remove all gluten in my diet. including my supplements. Even went as far as gluten free personal care items. Some folks who truly have celiacs have to use gluten free mascara. Well, I feel better when not eating gluten, and that is the "cure" if you are positive. Sometimes I ask myself that exact question you posed....what else can go wrong with me? I've stopped asking because each time I have, the Universe brings me lots of opportunities to fulfill that request. My hope is that you can find some peace between now and when you get your appointments and answers. How grateful I am today for waking up in a cozy bed and then finding friends on here to talk to. Be well

123PAT profile image
123PAT in reply to mrspeffer

mrspeffer I so agree with the finding friends on here to talk to I have found that it helps alot. when having a bad day a lot of people look at you and because they can't see whats going on inside they don't always understand you. I am one of the lucky ones as my family keep me strong. I wish you the best and thank you for reaching out to me

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