After not being seen by a specialist in 13 years from being diagnosed with APS i asked my GP if she would refer me to see one of the rheumatologists recommended on this site. When i went to my appointment i wasn't seen by her but someone else. Unfortunately i had trouble understanding her accent (so did my sister) i took all my test results, wrote a family history and a list of all my trouble some symptoms that i had been experiencing, such as insomnia, pain and fatigue etc etc so that i wouldn't forget any thing but the only thing she discussed from my list was that fact that id thought that i may of had a heart attack or some thing at xmas (my gp just said weird.....it must be muscular) and she wants me to now go on Aspirin as well as continue to take warfarin which is a worry. The rheumatologist didn't even go through the blood tests that i had done by my gp which i only remembered when i got home! Im waiting to go and have a test now at the cardio department. I came back from my appointment feeling upset and thinking whats the point as i still haven't had anything to help with my symptoms.
Any way i have tried my best to look up my blood results via the internet until i see my gp about them. My serum c reactive protein level was 6mg/L [<5.0] which is higher than the norm is that level ok? I also had a speckled ANA result (weak positive/borderline) does anyone know what that means?
Thank you in advance for any replies. Keep up the good work admin team.
I'm going to London in July so may book to see Professer Huges. If its not to expensive.
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kay67
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Your last sentence sounds good indeed; your are going to see Prof Hughes in July when you go to London.
If so you must book at once as I know he is exstremely busy and everyone wants to see him also.
Ask for copies of all your test and blood results. Good perhaps that they will cheque your heart. You know this illness can affect all parts of the body.
Warfarin is the main treatment for APS. Try to keep the therapeutic value in range. My INR is 3.2 - 3.8 and I selftest to keep it steady.
Good Luck to get to see Prof Hughes or someone who knows of APS very well.
You need to go back to your GP with your sister and explain that the appointment was not good enough and not with the recommended specialist off the list, insist on being re referred or find out when your next appointment is at the hospital and then ring up the actual specialists who you were meant to see, secretary and explain that you did not see who you were meant to see and state clearly that you do need to see them, due to how unsatisfactory it was and that they must bring your routine scheduled appointment forward. Sometimes when clinics are busy they put you with somebody else, I refuse point blank to have those appointments and insist on the right person, unless I know the other one and know they have read mine or my teenagers notes. MaryF
I have a copy of the letter that was sent to my gp, it states that i don't even have fatigue how she assessed that without even discussing it with me is beyond belief. I struggle on a daily basis with fatigue as do many others.I have to go back in a years time. I will be seeing my gp soon so i will explain that it was a waste of time and ask to be referred again. thank you for your reply. x
Ring up the secretary of the Specialist and then ask the secretary for their email address write it to that address marked for the attention of the specialist. MaryF
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