Support group in Northamptonshire???

[Gemgem]

Hi All, I'm new here and hoping someone can help. I've been searching online trying to find a support group in the Northamptonshire area but I can't find anything at all. Does anyone know if there is one? Thanks in advance

[MaryF Administrator]

Hi, support groups are quite a new thing, although a couple of established ones, I am about to start one in the East of England, Suffolk, but in the mean time the support is on here... hope all is ok for you, as much as it can be. MaryF

[Gemgem in reply to MaryF]

Hi Mary, thank you for responding so quickly! I was just hoping to try and get some more information really, I have checked out the website and it was great but still didn't give me everything I was hoping for really. I was diagnosed 5 years ago and at the time I was referred to a haematologist who gave me a leaflet to read through, nothing since. Last year I was admitted to hospital with a blood clot but they still didn't feel that I needed any medication to prevent another one. I have an appointment with my GP in a few weeks time as I'm starting to get severe headaches and have a blotchy rash on my arm but would have liked to speak to someone face to face that knows a bit more about it as I'm quite clueless and don't think I can digest any more information at the moment!

[MaryF Administrator in reply to Gemgem]

You need to be referred to somebody off our list of specialists: hughes-syndrome.org/self-he... and you can achieve this with a very firm letter to your GP, if this fails, make your GP test you extensively, blood tests freely up there on our forum, also get them to do your thyroid, also vit d, iron and b12 and then take these tests and go privately to London Bridge for some help. This way you can get some help. However I don't see why your GP would not refer you. MaryF

[Gemgem]

Thanks Mary, I will ask my GP to refer me when I go and see him. To be honest I'm starting to lose my faith in them, always feel as though I'm being fobbed off! Are you supposed to see a rheumatologist regularly after being diagnosed with APS? x

[MaryF Administrator in reply to Gemgem]

It would help you and your GP if you were seen by somebody off the list. MaryF

[minnime63]

Not necessarily, Gemgem! I saw a rheumatologist once, she diagnosed me then discharged me. The trick, as I've learned from being on here, is to make some noise at the doctor! Good luck xxx

[Gemgem]

Thanks minnime63, looks like that is what I'm going to have to do, fingers crossed they take me seriously this time! xxx