why do I feel pig in the middle !!

[jayfer]

I have mild lupus, fibromyalgia and being tested for sjogrens. I asked on here about lupus fog after a visit to A & E as disorientated and told that was the problem. I saw my specialist last week who said he thought it was 'vascular' not fog and advised me to see GP re aspirin daily. My GP has refused saying if it's vascular more tests should be done including brain scan. Is the 'vascular' episode due to lupus so should specialist follow up or should GP do this. Do I just buy aspirin & take as advised or follow GP advice & not take it. My next rheumy apt is in 3 mth. My GP was great in helping get a diagnosis but now says he can't give medication without ok from hospital. Any advice gratefully accepted

[Manolo33]

Hi, I have found that ringing the rheumatologist secretary for advice is useful, explaining the situation - also ringing to check for cancelled appointment to see them earlier. I had a similar thing before I got my diagnosis and was given a cancelled appointment the same week - diagnosed and put on new medication.

I also get the disorientation, and am not sure which one of my diagnosis it's connected to - I do have vascular involvement so it could be that?!

Hope this helps.

[jayfer in reply to Manolo33]

Sorry Manolo I did reply but it appears to have vanished !! I am waiting a call from secretary tomorrow. Thanks for taking time to give advice

[Manolo33 in reply to jayfer]

Ah that's good - it's always worked a treat for me. Good luck.

[willowwag]

Hi jayfer, when you went to the rheumy appointments did they ever give you a telephone number to the emergency team, if so give them a ring it goes to the monitoring clinc for us lupies. If you havent got a number ask to go through to the receptionist for your consulant, and ask can you be seen sooner. Good luck hope you get a answer on what to do, its terrible feeling in limbo and feeling unsure of what to do for the best.

[jayfer in reply to willowwag]

Hi willowwag. I am waiting for his secretary to ring me tomorrow over a letter I have received today in support of me getting my pension. it says I had a probable TIA and that he is going to be doing more tests in 3 mths so need to know if he's told GP too.

Thanks for your advise

[willowwag]

Hope all goes well for you, let us know how you get on.

[jayfer]

hi, well I spoke to the secretary, who in turn spoke to the consultant. Can't believe the reply!!! He can't remember advising me to take aspirin and hasn't written it in my notes so don't bother with it. As if my stress levels aren't bad enough, all that worry for nothing