confused-what to do: I am totally confused by the... - LUPUS UK

LUPUS UK

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confused-what to do

anbuma profile image
7 Replies

I am totally confused by the new HU.why change something that was ok.i saw my dr today fro blood tests results and to view new meds.he said (just as I knew )that bloods were normal and not lupus,yet I do have some of the symptoms including nasal sores,scalp condition ,etc.someone mentioned Graves Disease when I asked about the lumps I have in my neck.sore throat,choking and coughing ,and dr said throat was sore.he said it something going around but I know different.have been taking cough medicine and sweets fro a week-still the same.told him i couldn't cope with swollen nose and stomach anymore.said to see him again in 2 months.my concern is that if I have sore throat etc and it is graves disease they wont do my gallbladder op.thinking should I make another appt and get something for my throat/cough etc and tell him I believe they are connected to lumps.

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anbuma profile image
anbuma
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7 Replies
uzi41 profile image
uzi41

I like the new HU....gives us more options. ....and its interesting to see what all the new bits do...take care. X Uzi x

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

The HU team had to upgrade to the new platform because the other one was getting to busy. The new platform should prevent them from having to do a big change again and it gives them a much better foundation for improving their service. It may take a while for you to get used to the new platform, but I think once you are used to it, you may notice the benefit of some of the new features. In the mean time, let me know if you have any problems and I'll do my best to help.

gabs profile image
gabs in reply to Paul_Howard

Hi Paul. Thank you for explaining the reasons for the changes and I am trying my best to make the new site work for me. The problem is it no longer feels like a question and answer forum where you can chat to a number of people who are obviously on the same wavelength. I know Lupus is a multi-faceted disease in that it is not simple and straightforward but on the old system I seemed able to link in with other people in a way that this system doesn't seem to allow. Any suggestions? Gabs

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to gabs

I'm not really sure what the issue your experiencing is exactly? Are you able to explain in a different way? Is it due to the cosmetic changes to the site or something else that has changed?

gabs profile image
gabs in reply to Paul_Howard

I don't think I can put into words what I am driving at. I need to give it some thought and will come back to you as soon as I can clear it in my own mind. Gabs

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to gabs

OK. It would be helpful to pass along any feedback that you have to the HealthUnlocked team, so if it is something you can find a way to express, please let me know.

anbuma profile image
anbuma

once again dr not taking me seriously when he said "its something going around"-"something going around"wouldnot cause lumps in throat nor enlarged thyroid/goitre??

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